You’ll know us by our passion, hearts still grieving, heads unbowed #JusticeforLB

Fence

A year. 12 months. 365 days. 8760 hours. 525,600 minutes.

A year of murk, of buck passing, of cover up, of redaction, of bluff and excuses.

A year where glimmers of hope and humanity have reared their heads, just often enough to keep LB’s family believing.

A year has passed since the publication of the Verita report that found LB’s death to be entirely preventable. In that year a movement has formed. A loose, crowdsourced, online and offline, brilliant, committed, creative and relentless movement seeking #JusticeforLB. Seeking to improve things so never again does a learning disabled person or their family have to search quite so deep, for quite so long, to get answers and find the humanity that they deserve.

In the last year thousands of people have come together to take action; to raise awareness and funds; to improve and question and hold to account. Entirely volunteer led, with @SaraSiobhan as a reluctant spokesperson, we’ve laughed and cried, we’ve struggled and grappled and failed to answer the hundreds of questions starting why or how. We’ve honoured and remembered and given hope, a precious commodity, to many others. You can read more about the last year in our Herb Audit Office report here.

How do you mark a year on since publication, and still no accountability? How do we acknowledge the small steps of progress towards JusticeforLB, when there is still such a long way to go? How do we balance the needs for noticing, for thanking and for requiring more? In true #JusticeforLB fashion we’re giving this space to our network, our movement. We invite you to share your thoughts, comments and reflections a year on. Is there any point to all of this? What difference does it really make? We leave you with a poem, written by Alex, and shared with us just in time for this post; one year on, a rallying call:

In the name of the dudes, the named dudes, and the un-named dudes
If you are our protection, please don’t show me your attack.
When you assess and treat our dudes, you don’t seem to send them back.
We turn to you in crisis when we are full of pain,
You take them and you chill them, numb them, stun them. And then shame.
In ATUs the screams and shouts are loud and from the heart.
The pain of lives who need your help is silenced with “don’t start”.
You dose them and you watch them and you push until they crack.
You engineer so much bad shit, they’ll have to be “kept back”.

You say that you are “helping” “We know best” then lock the door.
You take them at their weakest and you weaken them some more.

You wreck the lives of people who had great lives in the main,
You ATUs aren’t big enough to deal with real pain.
It takes grace, honour, empathy, compassion and deep love
To help a dude who needs to know that he is not alone
But you’re too busy showing me that dudes can’t cope “out there”
By drugging them then coaxing them to lay their anguish bare.
“You see?” You shout with glee “we said he was unfit!”
“Just look at the state of this room / her arms / his weight / take your pick”
You say that you are “helping” “We know best” then lock the door.
You take them at their weakest And you weaken them some more.

Our dudes like Claire and Steve will show the world they won’t be fooled.
Wrong trousers here, no iPad there….these are your nasty tools.
Claire snuggles up with Jonjo. Steve lines up his next great song,
But the shadows of the ATU continue ever long.
The screams become to big to be contained in your four walls
You tweak a dose, you run a bath, you log all of his falls.
An ATU, an ATU? That’s not where they belong!
These awesome dudes were born for Mottthehooplebowiesongs.

You say that you are “helping” “We know best” then lock the door.
You take them at their weakest And you weaken them some more.

The laws laid out to help our dudes are hapless backing tracks.
A jumbled mess of MCA, DOLS, Sections and CareAct.
Thumb twiddling health watchdog ombudsmans of fuckery
Who stand guard overseeing dots of I’s and crossing t’s.
“A new review part 2 is what is needed, I’m the man!
I’ll start one with the great and good, we’ll write a spiffing plan!”
The croissant speckled tweed lapels are quite turned on by now,
“Establish the establishment” they whisper “we know how!”

You say that you are “helping” “We know best” then lock the door.
You take them at their weakest And you weaken them some more.

We want you to know we see you. We see you and know your names.
We see you and we’ll shame you. Two can play these games.
And if you thought our dudes could make some noise, just wait and see
What happens when we learn what our collective voice can be.
You’ll know us by our passion, hearts still grieving, heads unbowed,
The Stobart trucks are circling and we’re coming to your town.
You took our dudes from us, you see. You bastards took our dudes.
Thomas, Laughing Boy, Nico – and those not in the news.
So show me your treatment. Show me that you care.
Show me your assessment. Give me evidence, laid bare.

You promised you would help them, you knew best, you held the keys.
You took them at their weakest then you kept them on their knees.

When you say challenging, we see pain
When you say appropriate, we see inhuman
When you say behaviour, we see feelings
When you say placement, we see prison
When you say care, we see neglect
When you say enquiry, we say ENOUGH

10 responses to “You’ll know us by our passion, hearts still grieving, heads unbowed #JusticeforLB”

  1. BRIONY MARTIN says:

    I have been thinking about LB, Sara and the campaign today and I am writing this just after I released a balloon for Thomas Rawnsley. I care about the environment so I checked that I was doing the right thing and cut off the ribbon and tag beforehand and then the irony struck me. Earlier on, the lady in the shop also made sure I was clear about how to release the balloon and then I double checked online that I wasn’t going to harm any birds etc. and I thought about how people get really passionate about these issues but who actually gives a **** about these dudes. I get so frustrated that animals can raise more money through crowdfunding and how people I follow would rather share a video of a dancing cat than support the #LBBILL. It reminded me of an interview with Jo Whiley that I read a while back where she talked about her sister with LD and about learning disability not being ‘cool’. And I think she has a valid point here. I also can’t help thinking that if our nation’s sweetheart,’ tax evading’ Gary Barlow was on board, there would probably be a national outcry. I don’t know what the answer is. On the one hand I am grateful, as being a part of the campaign encouraged me to volunteer with adults with LD which I bloody love! and to be more proactive in my own life but on the other hand I am absolutely disgusted that Sara and her family are still waiting for justice for LB and dudes continue to die without any media coverage.

  2. Noelle says:

    What an amazing poem, powerful, sad and too too true

  3. Valerie says:

    Beautiful poem. Made me cry because it beautiful describes what happens to the most vulnerable people of our society(Learning disability and people with Mental health needs) when they need help.

  4. Pauline C says:

    As a parent of 2 asd young adults, I applaud everything you do for making a difference to future young adults lives. You are laying the foundation for change and accountability,

    I have a postcard of LB’s up in my house and although Ive never met him, I feel connected to him in some way. He inspires me to do the best and be the best for my girls, so thank you xx

  5. Sarah O'Brien says:

    Your struggle is our struggle.
    Thanks for everything you do.

  6. Alison Telfer says:

    It must feel as though nothing has been accomplished but the awareness that you have raised as a family means that hopefully our own LBs will be safer for it. Having a child with Special Needs means a life of battles – we are in one now that has been going on over a year, it looks like it will end in the High Court. I have felt like giving up many times along the way but you and your family have been what has kept me going and for that, & on behalf of all the other Mothers out there, I salute you and may your justice nit be too far away.

  7. Alh says:

    You are making a difference with your continuous awareness. This type of situation cannot happen again. Keep fighting. X

  8. Jane says:

    Thank you for the poem, and all the passion and anger and refusing to go away and forget. My son and our family were so lucky, I thank the psychiatrist who saw sense and realised it would not help our son to Section him, to the police officers who rescued us when stranded after my son’s pain and fear overwhelmed him in a train and who didn’t judge me, and to the social workers who found safe places for my son, then worked hard to develop a supported living house where he is properly supported and happy, and to the psychologist who listened to me and respected my hunch about some medication that might help not harm. So many chances for my son to have ended up Sectioned or inan ATU. I’ll keep on posting for LB and Tianze and Thomas and all the dudes.

  9. helen cherry says:

    Wonderful poem thank you. I was tearing up reading it as my son has been kept in an ATU until he lost skills like football, painting, dressing himself and using Makaton to make a connection. He was attacked by other patients on his ward. The ATU he was sectioned to is now evaluated by CQC as unsafe. Loved the chorus.

  10. Zoe says:

    It’s just unfathomable isn’t it……Concordats and breakfasts and task forces…..ok the cynics amongst us probably never expected anything from those, but the Verita Report….? And Mazars….?

    I don’t know what the answer is but I do think we have to stop expecting those who should be accountable to do the right thing. They don’t live by the same moral code as us.

    Can those who are responsible ever be held to account…..my gut feeling is that the accountability has to come in the first instance from NHS England (Commissioners) rather than the Sloves and similar naff providers. If NHS England (the ultimate Commissioners of the services in which LB (and Thomas and Stephanie and Nico) died preventable deaths) can be held to account then wouldn’t it follow that the whole system could tumble like a house of cards? If they were somehow penalised/sanctioned as the ultimate accountable body then wouldn’t be in their interest to make sure that future services they commissioned would never again allow such poor practice….?

    It feels like this could only be done by using the law……so how about getting together some of the top legal bods (pro bono of course) and giving them the task of finding a way to hold NHS England to account in a way that could set a legal precedent that could be used by other families……? Lots of families bringing similar actions using the same legal precedent….

    It also feels to me as if engaging any further in dialogue with ministers and charity-businesses is wasted effort. We would be better off pooling our collective effort and energy into setting up our own provisions for vulnerable peeps in crisis and just bloody well beating them at their own game. We (families and peeps with autism/LD/disabilities) are the ones who are invested in making it work. We need to harness that. And that would give us a positive, hopeful focus for our energies (creating services that actually give people a good quality of life and make them happy! Happy and fulfilled staff who get job satisfaction, a fair rate of pay and development opportunities……) instead of the mind-numbing relentless dirge and drain of trying to persuade current providers to change. Be the change that we want to see.

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