Oh dear. Some despondency reached the Justice Shed today. There were a few twitter threads of discussion around the fact that no disabled people were on the #LBBill panel at the Humanities gig at Manchester University.
Nope. There weren’t. Should there have been? Good question.
#JusticeforLB and the #LBBill have been organic, unscripted, slightly disorganised campaigns. Everyone involved is a volunteer. There’s no structure, no resources (other than goodwill which has been available by the shedload) and no agenda (other than effective change). Most importantly perhaps there are no vested interests.
Many #JusticeforLB campaigners are disabled. People have contributed in all sorts of ways. An open and transparent campaign. Anything and everything goes (just browse #107days to delight in this). A mix of determination, commitment, passion, humour, fear and fearlessness, and a refusal to be drawn into meaningless, empty and fake talk about what is about to change. The amount of hours and (crowd sourced) skills and support provided for free impossible to count.
This is in contrast to the spectacular failure of other efforts to make life better for learning disabled people. The National Audit Office are publishing their investigation into the ‘dread to think’ sums of money squandered on the Winterbourne View Joint (Non) Improvement Programme on Wednesday. This should make for an interesting – finger nails on the blackboard – type read. Big charities and other organisations have also talked the talk at length, across the last three or four years, within the stifling constraints of existing structures, organisational layers, an eye on salaries and the awkward position of being both campaigner and provider. Tripping over in jargon alley, distanced from the experiences and engagement of learning disabled people and their families, apart from the often tokenistic involvement of one or two disabled people, hands over ears to avoid properly listening.
So should there have been a disabled person on the panel on Monday? Of course there should. We’ve met with disabled people’s organisations. Cracking easy read bill resources are available. There have been events organised across the country focused on getting feedback from learning disabled people. Passion, commitment and effort have generated a mountain of feedback waiting to be analysed and fed into the next version of the Bill.
That the panel didn’t include a disabled person shouldn’t be a negative reflection on the campaign. It should raise questions, discussion and reflection on how meaningful involvement can happen within the context of no resources, little time (or structured organisation?) and an antipathy to tokenism. And what this means about ‘inclusion’ more generally.
As well as a shared commitment to making things different.
Well Said Sara. I’ve never known a more inclusive campaign. There are always going to be those who criticise, whatever you do. Real engagement like that undertaken by the justice for LB campaign shines a light on the current tokenism undertaken by so many…including CQC. X
I agree with emptynestmum. just looking back at the comments made on Twitter, it struck me how little the wider disability movement has spoken up on behalf of people with learning disabilities in the past. Even with the big scandals like Winterbourne View, besides a few tuts and notable exceptions, there has been a deafening silence. People with learning disabilities have been widely ignored by disability activists and the disability rights movement in campaigning. I wonder if this desire to be part of the #lbbill is what can bring the strength of disabled peoples voices and their anger to the people who cannot speak for themselves? I wonder if we can have a campaign where families and allies are equally valued and we can fight for what is right together? I wonder if when we talk about the rights of disabled people in society that we mean all people, including those without a voice and they aren’t forgotten by disabled activists?
There is so much token inclusion out there with tonnes of money thrown at ‘co-production’ and ‘listening exercises’ whilst too many of the most disabled people in society continue to be incarcerated, neglected and abused. They need you to campaign on their behalf, because very few others have campaigned with the strength and powerful messages the #justiceforlb campaign has. I look forward to the same strong and uncompromising messages coming from the disability rights community in developing the #lbbill, then perhaps we will see some of the changes that have happened for disabled people more widely, happen for people with learning disabilities too!
Well slap my thigh with a wet kipper…anyone would think learning disabled meant thinking disabled…
I think I might welcome a discussion about what “learning disabled” meant/means.
I am a (fairly) noisy parent. I don;t think I speak “on behalf” of my daughter. I speak against anything I think likely to disadvantage her, I get angry at the easy assumptions that are made. I don;t speak out for her as a member of a group, but as a person, an individual. Solutions that work for others may or may not work for her, and it is in the end her needs and wishes that matter, not mine. Yes, anyone with LD who wished to be involved has a voice that should be listened to, but won’t necessarily be speaking for my daughter.
1.Try to get safe far less happy support for son/daughter
2. Fail badly. Guilt and grief.
3. Try to get justice then,
4. ‘barbed wire ‘wear ’em out’ justice (??) processes.
5. Do all the monitoring all the time
6. More and more empty disrespect meetings
7. Monitor ‘their’ cheapest agencies.
8. Pick up and glue broken care
9. Remember when you were not always tired angry and worried. Take time out to cry .
10. Swallow political correctness lectures……that spear you.
11. Doing the wheel….1 and 2 etc etc etc………………………etc every day.
…..quite a lot of disabled people at the meeting?
I think if some of the critics were to look at #justiceforLB and #LBBill as a whole they would see just how much involvement from disabled – – and especially learning disabled people – there is. The reason for trying to change the law is so that the authorities will have to listen to their wishes and those of their families before forcing certain care solutions on them. The idea for the LBBil came from a father, Mark Nearly, who had to battle for a year and go to court to get his son Steven home. And all the time Steven was saying he wanted to go home and was being gnored. This removal of people from their homes is what he LBBill is trying to overcome. We want people to have the right to be cared for at home and in their own community, even during a crisis. If this had been available for Connor he would not have been allowed to die in an ATU.
It is important to hear Steven’s and Connor’s stories and we are so lucky to have the invaluable support of Steve Broach and George Julian – bereaved parents and parent carers can’t do it all themselves.
We supporters come from all backgrounds. I can’t work because of physical and mental health problems and a period unable to leave a psychiatric hospital when young I hope gives me some insight into what these young people in ATUs are suffering.I do what I can.
Everyone is, and always has been,welcome to support, contribute and participate, and get behind this desperately needed change in the law.
There will always be pedantic comments. Some humans cant help themselves. Please don’t be negative. It is not helpful unless people offer suggestions, time and help and get creative. Every group I have known eventually turns on itself , let this be the one that doesnt , let this be different . All together, for better.
Wise words Lisa – Sara you have done what is right for you – many people like your son and mine don’t have a voice and their special and specific gifts, charms and needs are not necessarily easily represented by those who do have a voice – the voice of a loving mum and dad cannot be replaced.
It is difficult for all of us to truly represent the bredth and depth of each persons experience – so take joy when support is positive and remember your voice is about those without a voice – when others are challenging – they may or may not have something to add.
This group is different.
Mark and Sara, and the LB bill campaign, have/has opened a window of real hope.
Tokenism stinks wherever you find it. We all know when we are being patronised.
My son whose framework of the world is framed a fair bit by TV and DVD’s, (see Marks blog today) is always the main guy for me at all the ‘can we have more/better please’ meetings we go to together.
One formal (neglect) complaint meeting was in a very ancient panelled council building, with portraits of equally ancient councillors all the way up the staircase. As we sat under the stairs looking down at them, I asked my son what he thought, he said ‘like Harry Potter watch the eyes’. On leaving the meeting his head soundly patted, I asked him what he thought, ‘like television programme mum, ‘we got fired’.
He summed the meeting up better than I ever could.
no despondency,there is a genuine window of hope here. No complainant fatigue ending in a nonsense of ‘ widespread learning shared widely’. This campaign is different and thankfully there are willing and able minds and hands at work. I have not contributed any feedback to the Bill because I can identify an existing framework for every idea I have had ! and they all ended in failure. I am clueless. I spent a decade going round in circles , many families have been navigating for decades. It is so important any/everyone able to contributes does so, no quotas for representation are needed. Surely anyone can pile in and the rest can pipe down.
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