Another smorgasbord of conversations, chat and happenings over the last few weeks. Leaving me puzzling. Mostly about anger and silencing.
As ever, strands of love, rage, activism, academia, despair and some shite.
A project meeting earlier. Our @OlderAhead project is more than needed. We knew this, the first chunk of work has generated evidence to support it. The lives of older people with learning disabilities and family carers are largely ignored in existing research. A family carer co-applicant, and architect of the Embolden project which directly led to this study, pointed out – slightly tongue in cheek – that the funder should be pleased. Yes. [No.]
I was reminded during the meeting how our dad would come home from work every evening when we were pups and ask ‘Did anything strange or startling happen?’ It never did. Or we simply didn’t recognise if it had. Coated in love, comfort and cosiness.
A Zoom catch up later with friends. Conversation turned unexpectedly from open justice to obedience. And rule breaking.
‘I’m too obedient.’ ‘No you’re not, you’re a rule breaker.’ ‘No I’m not!’ ‘Yes you are, you’re always breaking rules!‘
I chuckled watching this exchange. And puzzled. I don’t think it is about breaking rules, as these rules are rarely written or even articulated. It’s about being bold. Forthright, direct. Uncompromising. Characteristics too often punished and punishable. Especially in women. The loose repackaging of acts as ‘not being nice’. And the silencing that comes with this repackaging.
An old blog post was randomly retweeted during the call. ‘Revisiting Tits and Trolls’. [I dunno, it’s woven through social scientists to ‘revisit’ stuff. Reflect. Agonise. Be curious. Did anything strange or startling happen?] Back in early 2012 I wrote “The trouble is, blocking ‘trolls’ (i.e., people who disagree with you) will lead to twitter becoming a tedious, turgid space where you’re surrounded by similar others, with your views and values protected as kind of cosily superior and untouchable.” Indeedy. Another form of silencing.
A formal complaint about my tweeting was made to my employer a few days before Christmas. A senior academic said I was bringing ‘Oxford University into disrepute’. Quite the allegation. Demonstrating more apparent upset with my tweets about their work than the torture and abuse they were reviewing.
I keep thinking about how angry we should be – as academics, as human rights experts, as journalists, as people – about the abuses we witness? Anger is an appropriate response. How could we not be angry about this stuff?
Yesterday, Bindmans shared news of urgent judicial review proceedings around the appalling situation of a young autistic man with learning disabilities. This isn’t news to many of us and A and his family are not alone in this barbaric situation. And yet this is apparently acceptable. The silence of those professionally involved (across years now) is quite something. A silence that can only act to further silence. How is this enabled or allowed?
During a recent Young Legal Aid Lawyers panel ‘Holding the state to account after a death’, co-panelist and barrister Mira Hammad passionately argued for greater collaboration with activists. She described how much of the training of solicitors and barristers involves learning to be ‘obedient’ [my interpretation]. On Thursday, at an open justice event ‘Does being watched change how justice is done?’ discussion focused on the importance of witnessing and amplifying the content and processes of court hearings. We talked about the micro-violences families experience in court as well oiled barristers defend the state using well worn and often nasty tactics. [I use the term micro-violences here not to diminish the impact of these actions on families, instead to convey how these are often treated as acceptable by the coroner, judge or magistrate.] Louise Tickle who organised the event said this harm underpins why she does the work she does.
I started writing this blog in 2011 as a fun project, naively optimistic about Connor’s future. It has developed into a space bursting with strange and startling. In the last decade we’ve learned, viciously experienced (and documented) how appallingly people with learning disabilities are often treated, how the state response to the death (or serious harm) of marginalised people is often brutal and how many senior, influential people are prepared to talk the talk with zero intention of walking anywhere. We know there is little or no consideration around those people with learning disabilities who live to an older age and little thought around the trauma people absorb across their lifetimes because of the paucity of effective support and a chilling void of imagination. Humanity stripped back to bone and pervading rottenness.
The various means of silencing, big, small, deliberate, incidental which include blocking, censoring, complaining, courtroom tactics, gaslighting and repeated ignoring or dismissal can be powerful tools. And it’s exhausting being depicted or viewed as troublesome, hostile, toxic etc, etc for daring to be angry.
There is brilliance mind in the form of determined individuals/organisations, driven by a strong sense of social justice, and refusal to accept the unacceptable. People like Mira, and the panel from Thursday which included George Julian, Caoilfhionn Gallagher QC and Nick Wallis (whose epic and dogged expose of the Great Post Office Scandal is worth a listen). My Life My Choice, INQUEST, Justice, Open Democracy…
Being angry about injustice, cruelty and worse is important, valid and appropriate. It should concern us, generate engagement and a commitment to both understanding what the anger is about and what we can do to reduce it. Or get shot of it altogether.
Did anything strange or startling happen today?
‘Don’t ruffle feathers Pauline, you have got to be crafty’ That piece of advice was given to me by another parent (someone I admired) a few years ago when we were fighting the LA for better services for our sons.
I ignored that advice but she was right, ruffling feathers and holding the LA to account did my son no favours. Fighting my corner and trying to get the best medical and social care only made me a victim of gasllghting and worse. Those people higher up in the echelons of power in LA’s and the NHS have no shame or integrity Sara I am beginning to believe that truth does not exist anymore
Your blog highlights so accurately the challenges facing people who want justice for their loved ones when they die in the care of the state. You have shown remarkable bravery in spite of the way you have been knocked down and vilified and yet you get up again and are still prepared to carry the argument further to raise awareness of the unfairness that exists in this country towards people who have no voice and are often forgotten by society. Actually Sara many many people admire you for your honesty and courage, me included.
To challenge we must first have a voice.
To be heard we need a platform; and we need friends to hold us up when our bruises weaken us. We need the fellowship of loyal champions.
Few mums and dads have all this.
Too often mum or dad is powerlessq and feels powerless. What do do? How to do it? If only one voice – then no one listening.
What of our fear, anger and outrage when the worst happens ?
I am continuously impressed by the constraint shown by families who share on media. What do these grieving,dignified and articulate people do with their feelings; what do they trade for these public minutes to plead for justice?
Justice that costs.
I wonder, where is the rightful anger – where is the honest – eye for an eye outrage?
This trade of self’ is required by all families of a learning disabled disabled son or daughter.
It takes practice. It takes stoicism. It takes a lot.
For as Pauline so accurately states ‘nice’ families don’t complain. Even when the long feared, very, very bad things happen.
‘Overbearing, dependency weaning, or neglectful, (depends on etc) pushy – ‘middle class’ – are all mum or dads who complain (ed) Or ask(ed) for better.
Worse names and new characters are generated for us – dogged ones.
Always dangerous to move from expected – being ‘nice’; the support path can become increasingly stony,
And It always pays to be nice when the care manager calls.
People paid to wield status – ask of us. Expect of us.
Our sons and daughters are acutely aware to be ‘rewarding’ ; always cheerful and hopeful.
The social care profession – celebrates and supports each other. Rewards self with local and National pats on back. A job well done. Competely missing the point – of Social Care ?
We have learned to fear you and we do not trust you. We behave. Nice.
We trade who we are for a better life for our son or daughter.
We survive on the support of family, friends and hope. Plus and a job well done relationship, with a brave – as powerless as us – support worker.
We mums and dads just behave.
Usually with weary dignity.
While our anger etc – silently, eats us.
So beautifully written and so very very true. Weary Mother sharing your experience of years of challenging sub standard social care and your insight into the suffering of families with a loved one with disabilities is so needed and welcome. Thank you.
And yours also Pauline. That deaf blind elephant – certainty, continues to feed fear of honest open dialogue ?
Well said! X
Too much poetry here ..
and not enough perspective.
Thats the spirit x