Frank and the Super 8 movies

An overland truck trip in the late 80s. Amersham to Kenya with a bunch of strangers who answered an ad in Time Out. The above thread continued to explain how 12 years ago on holiday in Devon (the yurt gig where Connor thought the farmer was wanted by Interpol) we met a photographer who said that the last Super 8 developer globally was closing that October.

By this time, these two tatty films had travelled across Africa for 6 or so months, been sent home to me in the post (I jumped truck halfway through the trip), and moved house at least 6 times. They featured on this blog during a half arsed decluttering period back in 2011.

I tweeted asking if anyone knew of anywhere that developed this film or if I should finally chuck em. Bruce Bennett, a film studies academic, pointed me at Gauge Films who, in turn, said the Super 8 Reversal Lab in the Netherlands was my best bet. There I ‘met’ Frank.

Frank talked me through the process of getting the films developed by an arm of Canadian Film Rescue International. I had to courier them to him by Dec 17, prepare myself for a Brexit related hike in price [groan] and not expect to hear anything until March this year. The charge was pricey (you had to pay a set fee if there was nothing on the film and more if there was).

Cripes.

It was unlikely there would be anything to see given how much time had passed. Could I really not find out?

I’d pretty much forgotten the whole shebang when Frank emailed this week to say there was footage and the films were being couriered back home. Wow.

It was exciting holding the super smart package earlier. The revisiting, rediscovery even, of a piece of the past. The transformation of yellow ripped covering, of black snappy plastic casing and film into something else. I emptied the carefully wrapped content onto my lap.

What the actual fuck? Noooooooo….. I shook the padded envelope. Just a postcard. And two reels of film.

What do I do with these?! I asked Rich.

Er, find a cine projector…

We both laughed. He laughed more than I did.

I dug out Frank’s email to work out what had gone wrong. There was mention of a download. I emailed him and within seconds had the link. Two files. The first was black and white arial footage of Niagara Falls. [No idea. Rich laughed even more.] The second, 3 minutes of eerie, silent, grainy, washed out, truck trip footage. [40 seconds below]

The significance of holding onto artefacts is something I ponder over. My recent skip experience was a cracking example of a ‘gone schmon’ phenomenon. A mountain of stuff erased. The loft lighter. I’ve one sister who’s a stern custodian of the keys to a life clear of unnecessary stuff. I imagine her baffled, impatient even, by the tale of Frank and the Super 8 movies. Of the holding onto crappy, dusty bits of plastic for decades. Not responding to the random deadline issued on a Devon campsite or bothering to do anything with them before.

My sifting of old stuff has also underlined an unrealisation of anticipatory promise which oddly doesn’t disappoint. You can’t ‘rediscover’ parts of the past because they have passed: the richness and depth of sensations; smells, textures, sounds, feelings; the context, the person you were at that time and those around you. This is fine.

At the same time the capturing [of what and why?], the sharing [with who(m) and why?], the keeping and revisiting is important. The story of my Super 8 film, the brief piece of footage taken across a three month period in the autumn of 1988 by my 23 year old oblivious to white privilege self is (living) social history. The story, the film, has woven new strands involving Frank, Bruce Bennett, Rich, my sis, readers of this post, generating further riches and meaning.

Now I need to find out if my parents ever did a fly past of Niagara Falls. Or let Frank know there’s been a mix up.

Of Candy Crush, marking and moving

Has my heart hardened? 

I ponder this, often. Time between thinking about Connor stretches or repeatedly collides creating shifting and unexpected shapes. I don’t think about him all the time now. [Howl.] Grief rituals seem to be slowly disappearing. The weekly Thursday morning ‘getting that call’ pain hammer has largely gone. Marking the 107 days Connor spent in the unit has receded. Comic Relief – the start of that unfolding – crept up on me this year.


We’re moving house. After twenty odd years of living here. Eight years after Connor died.

Stuff disturbed. Memories shaken from slumber and disrupted. Revisited in a different space and context. A backdrop of global pandemic. Boxes of stuff. Paperwork. Years of reports, condemnation, reviews, reports and condemnation. The paper, typeface, words, postmark, pre-internet. The careful and meticulous pathologising and marking of a tot who wouldn’t reach adulthood. Because of a lack of care, pathologising and marking.

Should we just chuck it all out?

I brusquely pat my forehead upward with the palm of my hand. Like Connor did when faced with something that bothered him.

Forget about it mum. Yep. Forget about it.


I funnel stuff from the loft into a skip that sits outside our house for weeks. Operating a piecemeal ‘keep or chuck’ operation with the aid of a giant Ikea blue bag and Rich or Tom when necessary. Precariously balancing ungainly and leaking bagfuls of stuff down the loft ladder. Emptying the content into the cold metal container out the front. Lobbing some bits from the front door with a sense of ‘fuck you’ satisfaction and achievement. Squeezing by later, to go to the Co-op or walk Bess, I rummage about and pull stuff back out. Worrying about rain and snow.

Why? I’ll do something with it. What? I dunno. Write about it. Mark it. Like it marked Connor. Marked us.

Marking.


I started playing Candy Crush on Mother’s Day 2013. A week before Connor was admitted to the unit. Rosie told me about it that weekend.

It’s so good Mum, me and Becky haven’t stopped playing it.

I was heading to Manchester that afternoon to see her, see a mate and attend a stupid fucking work meeting on Monday morning.

I left Oxford early, late morning. Rich encouraged me to go. Things were not good at home. 

I downloaded Candy Crush on the train


Days (weeks?) after Connor died, a neighbour stopped and told me her daughter had died some thirty years earlier. In her early 20s. A road accident. 

How is this possible? We chatted on this street for more than ten years. I sat in a meeting about primary schools with your daughter-in-law. Your grandson went through school with Rosie. We’ve talked weather, empty niceties for years. What do you mean your daughter died?

She shared kind words of wisdom. I don’t remember the detail. I could not understand how someone could weave the enormity of such loss into their everyday life without it being visible. Tangible even.


I still play Candy Crush.

We’re moving to the Manchester area.

I still don’t understand the ‘hows’ of weaving loss into everyday life though I think we’re doing it.

Time.

‘Did anything strange or startling happen?’

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.

Imagine.

Did anything strange or startling happen today?

Moments

Early in the new year, Steve Unwin tweeted a photo of him and his son Joey with a short strapline. This gently humorous pop at the largely ignorant (not in a pejorative sense) world, generated a thread of photos of children, young people and adults doing the stuff they love to do. A virtual slide show of brilliance, joy, fun and laughter. The stuff of love. Steve was invited onto the Radio 4 Today programme on Monday morning to talk about Joey and this celebration.

A moment.

The Maple House Management Suite

Last Saturday, a grey and mizzle-drenched day, I walked to Slade House. I took part in Katherine May’s Wintering podcast a few days before Christmas. During a sensitive and perceptive chat she mentioned how it had emerged at Connor’s inquest (2015) that he’d died in the STATT unit at Slade House. Not later at the John Radcliffe Hospital as we’d thought [howl].

I never went back to the unit after Connor died and was oddly reminded, nudged, bothered about this. Thinking about the place and space where he actually died. Simultaneously within and outside of (anything resembling) an NHS hospital and what this might mean. Words that, even as I type them, generate a mix of sadness and incredulity that continues to defy articulation.

I walked past still familiar landmarks; the Londis (now Best-One); Tim’s Kitchen takeaway; the Corner House pub (now closed); the fire station. My legs and heart slowed at times by quiet dread and sadness. I crossed the road at one point to walk in a different direction. Fuck it, I almost thought, I’ll head off somewhere where the pain is lessened. I barely touched the kerb before crossing back.

I recalled brighter (in light) early and later spring evenings, nearly eight years ago. Driving along this road to visit Connor, returning home without him. Half an hour, longer, shorter, later, earlier trips, with and without family and friends. Sometimes hearing about a trip to Londis to buy coke and crisps. Often hearing little. It always depends on who is on duty.

I reached Slade House. The initial monstrosity of depressing, dark brown brick structures, an unfinished car park, patches of scrubland and cultivated grass areas. I walked past the main office block with meeting rooms and offices where Connor as a pup had occasionally been coaxed to attend appointments. Where, less than four weeks before he died, he was finally paraded in front of a room of who or what? [I still don’t understand.]

On the fence at the far side of the car park was bright new signage pointing towards the STATT unit.

The Maple House Management Suite

The Maple House Management Suite.

There was talk of developing a ‘state of the art’ unit at Slade House a few years back when Oxford Health finally took over from Southern Health. A place to support young people with plenty of space and a shell to work with.

A moment. That became the Maple House Management Suite.

Not valuing certain children

In July 2020 I wrote about the precariousness two of Connor’s peers were experiencing because of a lack of local appropriate support.

10 years or so ago I was on the slow train home from a long meeting in Whitstable. A mate rang to say Fran’s son J had been sectioned and admitted to a unit in East Anglia. Around 140 miles away. He was 16. I remember crying on that train. Through horror and devastation. Connor…mydaftlife.com

A has (extraordinarily?) remained in this 136 suite since July. He was given notice just before Christmas that he is being turfed out on January 7. In the five months since July (and the months and years before this) no interim space has been found or created locally for him to live while necessary home improvements (a heightened fence) are carried out. Instead, mediocre/failing units in different parts of the country are under discussion. He has a cracking legal team who are working to stop him being moved miles from home. Again.

As staff turn up at the Maple House Management Suite and wider Slade House site tomorrow, A will be finding out where he will spend the next chunk of his increasingly institutionalised life. It could have been so different.

Another moment of utter failure.

Joey and all our children

What Steve, Joey and everyone who contributed to the twitter thread this week did was express, and make visible, what every parent of a disabled children knows, thinks and feels. Our children, like all our children, are loved off the planet.

The moments captured here are well worn, trodden to death (literally) and brilliant. I’ve run out of time to try and present a polished end to this post. I dread to think what will happen to A tomorrow. At the same time I’m left holding onto the power of the disruptive energy which catapulted our children onto a mainstream, flagship news programme. A reminder of the #JusticeforLB campaign and the making of moments.

The photo

Joanna Bailey’s inquest finished today. Joanna, 36, died at a private Jeesal Group ‘hospital’, Cawston Park in April 2018. A day after her parents warned staff they thought she was about to have a seizure. ‘We’ll take care of her’ they were told. Joanna wasn’t observed that night, her sleep apnoea machine wasn’t working and when she was found unconscious in the early hours of the morning, four staff members stood by bickering about CPR until the paramedics arrived.

After a week of chilling evidence the coroner this morning told the legal counsels she would direct the jury to determine that Joanna died of natural causes. There was no budging on this. The family’s barrister Oliver Lewis asked if the jury could be shown a photo of Joanna.

The virtual air across the Microsoft Teams court platform became frosty. The coroner talked about this practice happening in criminal courts. It spilled into her courtroom sometimes [‘prison suicides’] and there was apparent agreement between her and the Jeesal Counsel, Mr Walsh, about underhand motives and the emotiveness of photo sharing. The coroner said:

“I really don’t know what purpose there would be unless it’s to register the fact she’s a human and I think the jury know that,”

After a week of being viscerally dissected in front of her family and wider public with a focus on deficit and deceit, fake seizures, allegations of abuse and troublesomeness, this seemed a stretch.

Mr Walsh insisted if the jury had to see the photo [howl], it should be after the jury had delivered their determination. Hmm, that’s not relevant given the jury has just been told exactly what to write. The coroner made this point to him but Mr Walsh would not budge.

“In my submission Ma’am, the usual practice in this court is not to do so. The only concession would be if it’s still required after the jury return to deliver the determination.”

Joanna’s parents were present during this tussle. Witnessing their daughter being treated with the contempt she was treated with in life.

“Could you show us the photo Mr Lewis?” asked the coroner.

A beautiful photo of a young woman appeared on our screens.

“When was this taken?”

“I’m not sure of the exact date Ma’am, it was within the last six months of Joanna’s life.”

The coroner was visibly surprised. Six months? She looks so different. The small photo she had in her bundle was difficult to see but Joanna looked so, so different [from what she’d imagined? Human even?] She decided that the jury could see the photo briefly.

The jury returned. Joanna’s photo was shown on the screen behind the coroner for about 20 seconds.

The blame

The stench of blame is never far from families of people who die in the hands of the state. As consistent and persistent as the production and content of a Big Mac. The photo exchange was horrible to witness. It highlighted the insidious practices of ‘defence’ barriers in dehumanising the dead to serve the agenda of their clients. It further revealed the assumptions and judgements of the coroner which had dripped across the proceedings like a slightly faulty tap. Why the sea change on seeing the photo?

An A4 photo of Connor stood on the coroner’s desk during his inquest. We even swapped it in week two. The coroner’s assistant made sure it was facing the jury daily. Swapping not swaying. We wanted the various, random members of public sitting in witness to our beautiful son’s preventable death to be able to see and hear about him as a person not a composite of revolting records.

As today unfolded and after Joanna’s photo was fleetingly shown, the coroner faced resistance among jury members to her instruction. The jury had asked informed, engaged questions across the week and were rightly puzzled as to why they were suddenly being told exactly what to write. The coroner’s answers were thin and full of holes. When asked why there was a jury, she gave a classic ‘because’ answer. It’s the law.

They eventually produced a list of eleven concerns about the ‘care’ Joanna received and wrote additional detail on the Record of Inquest form. Bloody legends.

A Jeesal medic, Dr Oyefesu, then continued with evidence about improvements the company had made since Joanna’s death. A tough listen in the context of the deaths of a patient both before and after Joanna. During a fantastical account of the glowing Cawston Park focus on health and wellbeing (despite a very recent CQC failing inspection review) Dr Oyefesu mentioned that Joanna’s family had brought her a McDonalds the day before she died.

“Yes… I saw that’, said the coroner.

For some (many?) of us there’s constant rage around these atrocity stories. A rage, deep sadness and despair. Thomas Rawnsley’s inquest also finished this week with a determination of natural causes. His mum, Paula, fighting every step of the way for her son’s rights in life and death while facing brutal resistance. The coroner’s casual and careless apparent agreement with Dr Oyefesu was devastating. The ‘them’ and ‘us’ the discussion had descended into. The worthy and unworthy. The blameworthy and judgemental response in front of Joanna’s parents.

“It’s patient and families fault,” said Oliver Lewis.

Pantomime swiftly ensued. Oh for senior figures to get as angry about the treatment of marginalised people. The coroner and Mr Walsh jostled for position on the outrage stage: “Such an inappropriate comment!” “How very dare you!” “You must apologise to Dr O.” “Mr Lewis you must apologise now!” “I can’t make you apologise Mr Lewis but I certainly invite you to…” The term abuse was even used.

Oliver Lewis apologised if he’d come across as ‘rude and ungracious’ and suggested there was little to be gained from continuing with the evidence.

This evening Joanna’s dad Keith said:

“We have listened in the last five days to a catalogue of mistakes, system problems and poor care provided by Jeesal Group to our vulnerable daughter. We desperately wanted the jury to be able to consider that our daughter’s death was contributed to by neglect because of the gross failure by the Jeesal Group to provide basic medical care. We are disappointed that the coroner refused to permit the jury to consider that Joanna died of SUDEP contributed to by neglect. We are grateful to the jury who took the time and care with the evidence and raised eleven concerns about the services of Jeesal Group which we fully endorse. We have lost our loving, funny and fabulous daughter and, in our opinion, there were so many missed opportunities to avoid her premature death.”
 

Laminating the dead

These posts are coming a bit quicker right now. Sign of grim times still. There was an All Party Parliamentary Group (APPG) on Learning Disability meeting yesterday. Barbara Keeley MP tweeted after the meeting clearly laying out the continuing failure to get people out of ATUs. The meeting involved a mother talking about her son’s ongoing inpatient treatment then a load of blather. Helen Whately, Care Minister, was present and again, seemingly excelled in mediocrity.

I don’t know why, nearly 10 years on from Winterbourne View these meetings need to involve the live retelling of atrocity stories. We’ve heard so many now it’s become almost voyeuristic, generating faux horror from a bunch of dusty parliamentarians many of whom couldn’t give a flying fuck outside of that space. It can also be parasitic and draining emotional labour for the storytellers and others present.

The way in which these meetings are organised sustains a narrative of disposable humans and bleak lives while taking time from what should be a clear, focused and strategic discussion on, er, action. It always seems to be the same parents in attendance too. The same small group of cherry picked bods.

This morning on twitter the discussion continued with John Lish dismissing APPGs as a meaningless industry. Five seconds of googling found that it is our old chum Mencrap which organises these meetings. Bit of a giveaway really in calling it ‘Our APPG’ on the website.

Holy macaroni. I tumbled straight back to an underground cafe near the Houses of Parliament where, months after Connor died Rich and I were invited to a meeting at the House of Commons by Mencrap. Not the learning disability APPG I’m now wondering? Surely not… In that dim space, we met other bereaved families and I was given an A4 laminated photo of Connor. Eh?

An hour later, ‘important’ people spoke at the meeting while families sat silently around the edge of the room. Five minutes before the end of the meeting, we were told to stand and hold up our laminated dead.

Seven years on and Mencrap is still laminating the dead. Still following the same revolting template of presenting bereaved or devastated parents to a room of pomp and performance. Nothing has changed. John is right. This is an industry. And further evidence that nothing will change while Mencrap retains the power the organisation has to effectively maintain the status quo in its own self interest.

Reviewing the review and a masterclass in othering

It’s a funny old time in academia at the mo. COVID-related research funding chucked around at times like sweets at a panto. The typically onerous processes of lengthy, lengthy form filling stripped back to enable speedy knowledge generation and transfer in real time. Action, immediacy, finger clicking are features of a different health and social care research landscape.

In May, the DHSC commissioned Public Health England (PHE) to conduct a review into the deaths of learning disabled people from COVID-19 after concerns were raised about this group. When you die on average 20-30 years before your peers [howl], a focus on how you fare during a pandemic with things like dodgy resuscitation notices, PPE equipment shortages and confusing information, is kind of crucial.

The review was published yesterday.

‘No shit Sherlock’

When I’ve more time and I can bear to, I’ll search this blog to see how many times the word ‘Sherlock’ features. A fair few I suspect. I doubt if anyone with (genuine) engagement and involvement in learning disability related stuff could possibly have been surprised by the review findings. Existing evidence, including numerous reviews, which underpins the path to premature death and impoverished lives along the way is now dense.

Less haste and more speed

Unlike the COVID research funding streams, there was no urgency in publishing this review, or even sharing early findings to start the whiff of essential life saving action. As Prof Hatton asks:

Instead a delay of months. I don’t know. Across decades of learning disability related scandals, horror, tears, rage, campaigning, fighting, the preventable death of our beautiful, funny, son and so many other people, this particular delay – during a global pandemic – cuts deep. There was no urgency. No urgency at all.

Senior and other bods in the Department of (Almost always) Health and (Sometimes) Social Care must have known the review findings back in July/August and ignored them. No one cared enough to say ‘Crumbs, we must act now’.

According to the BBC, Social Care Minister Helen Whately ‘has announced a review of the findings’. A review of the review. Pushing action further out of sight.

Scratching below the surface

The outrage the review generated was (for me) unexpected. There’s no guarantee of interest in the findings of any of these reviews. You only have to do a quick google of Winterbourne View and then Whorlton Hall to see the precariousness involved in trying to generate engagement with documented and even visual accounts of torture, abuse and death making (in a so-called civilised society).

Channel 4 News even led with the review in a substantial piece that included an interview with Ciara Lawrence, a self advocate, giving the story the centrality and authenticity it demands.

Sadly much of the response fell down the rabbit hole effectively created by the presentation of the report content and accompanying DHSC press release. It’s never a good look to be caught out effectively culling sections of the population and the press release in particular worked hard to head this off in the following ways:

  1. The inclusion of a handy and superficial ‘get out of jail free’ clause – ‘people with learning disabilities are more likely to have other physical health problems such as obesity and diabetes’. An early marker to place the blame firmly with people, ignoring the core issue of the impact of the systemic and longstanding disadvantage people experience.
  2. Prof John Newton added further fodder to this ‘faulty stock’ narrative with the statement ’It is deeply troubling that one of the most vulnerable groups in our society suffered so much during the first wave of the pandemic. We must do everything possible to prevent this happening again.’ People are made vulnerable by the actions of others, John. You are in a position of power and influence to do so much more than intermittent and ignorant handwringing about this.
  3. A sizeable chunk of the 214 word press release included a deficit laden description of what a learning disability is(n’t) and the Woeful Whately referencing the ‘cruel disease’ trope. Cementing the distance between the review findings and government inaction.

I suspect much of the publication delay was due to comms meithering.

When the swears no longer work

So what are we left with? I don’t know really. The swears have finally (hopefully temporarily) run out. Calls to bung everyone with a learning disability into the shielding category misses the point. Learning disability is not a medical condition and the issues that demand immediate action are (again) long term systemic failings in health and social care support.

The circulation of ‘the most vulnerable group in our society’ narrative is damaging and disempowering. The latest scandal risks using the pandemic to drag us even further back further from meaningful change. The government are complicit in this with the careful othering woven through their press release. For now I’m left with ‘Don’t make me vulnerable, punk’ bouncing around my head.

‘My silly letters…’ and training turmoil

The wheels of change are grindingly slow in the area of learning disability/autistic support, health and social care. Static really. Talk, so much talk, and little in the way of discernible action. In the last few years, learning disability and autism have inched onto the NHS and social care attention platter which is something. It shouldn’t be noteworthy though given the various stats around life expectancy, employment and wide ranging impoverishment of life which too often extends into death. A blistering letter by Barbara MacArthur in the Guardian last week on the abject failings people continue to experience was widely shared, generating momentary outrage. I did a sort of cry-chuckle when I saw BBC coverage yesterday. Barbara was quoted as saying

“And, of course, I write my silly letters.”

I interviewed Barbara and her son Howard, who are both autistic, 13 years ago when she was 80 and he was 53. She was a veteran letter writer back then.This is what parents do. We act. We do stuff. We try to change stuff. We write silly letters. Meanwhile a new report about research led by Dr Andrew Power at Southampton University underlines the importance of self advocacy, member-led involvement and social interaction in generating good ‘self built’ lives for people with learning disabilities. So important. The report highlights the patchiness of self-advocacy across the UK and I was struck, again, at how My Life My Choice are an exemplar in this area.

The usual suspects

In the last week, the successful bidders for producing the Oliver MacGowan Mandatory Training have been announced. There was a strange moment, a bit like my cry-chuckle, in which despair, fear, bewilderment and resignation rippled across social media platforms.

A bunch of the usual suspects, with a carefully selected token autistic person loosely attached to the National Autistic Society (Autism) and a parent carer loosely to Mencrap, coated with a hefty dose of Positive Behaviour Support (PBS) sprinkles via a third organisation, BILD. PBS can be experienced as an assault by those forced to endure it and yet is readily adopted as acceptable practice. A recent themed review which included 3 clinical trials of the use of PBS found no/negligible evidence it works.

Of the 27 odd groups across England which tendered for this work, it was awarded to the dodgy Mcdodge brigade with next to no involvement of the people whose lives the training will be aimed at improving. A brief foray into the CQC inspection archive (‘It didn’t smell of piss’ TICK) reveals Mencrap and Oughtism really need to get their own houses in order before designing mandatory training for others. The latter has only one domain judged as ‘outstanding’ across it’s entire offer.

Autism is also about to close a school ‘rife with bullying and safeguarding concerns‘. It’s extraordinary these failings and reputation issues (let’s not forget the sickening abuse at Mendip House or the death of Danny Tozer) didn’t factor into the selection process and I wonder how many excellent tenders were among those tossed aside.

An odd phenomenon

Questions instantly started being asked, as they should be, and an odd phenomenon occurred on social media. A bereaved mother (Oliver’s mum who the training is named after) weighed in and held up a grief card calling time on discussion. Odd because any mandatory training needs to start from a position of trust rather silencing. Odd because mandatory training has been a recommendation of various reports over the years and now seems to be ‘owned’ by a member of the public. Odd because it’s 2020 and we know that autistic people and people with learning disabilities should be at the centre of the process yet are barely visible. Odd because the silencing and accompanying blocking was selective. Ian Birrell (above), for example, came off unscathed while various autistic people came a cropper.

The plot thickened later that evening when a parent carer announced he was actually part of the Mencrap training consortium having earlier asked questions of it. His apparent lack of knowledge further highlights the risible public involvement in this process.

The oddness continued yesterday morning when I woke to a message from someone I’ve not come across before who shared a very lengthy DM unexpectedly sent to her. This was a litany of “Sara Ryan does this” “Sara Ryan does that…” “Sara Ryan ridicules the training…”. A cut and paste jobby the kindly tweeter thought and one I had a right to see. Wow. Is this really a thing? Drumming up support (or generating hate) behind the DM wall with grubby missives? [At this point I had a lump of poignancy in my throat thinking back to the joy, transparency and openness of the #JusticeforLB campaign. And how we collectively questioned, shouted, created, critiqued and unexpectedly laughed. I mentally added ‘absence of murk’ to the list of campaign qualities.]

I’m left with sadness about yet another wasted opportunity and more time lost for some people. The awarding of this work to two organisations which cherry pick a small number of heavily stage-managed people to work with, while presiding over failing services, is grim. Both demonstrate a wilful refusal to even start to understand or learn. The involvement of BILD is as chilling. Despite the protestations, it is impossible to believe that the training won’t involve PBS practices. Indeed, BILD have already advertised for a project manager to manage the training and a PBS pilot.

This training has been years in being called for and slow in coming to fruition. It effectively creates a giant empty tick box and a flag for the DHSC and others to wave under the noses of those who raise questions about continuing failings. A bit like the Leder project is described as a world leading investigatory process into the deaths of people with learning disabilities, the new training will be puffed up as something that bears little resemblance to what it actually does.

I hope those involved listen to the concerns raised by many and commit to being open and transparent with their developing work. To those who interpret questions and challenge as ‘bullying’, ‘attack’ and ‘sniping’, I’ll leave you with these words of wisdom from John Lewis.

A tale of three boys and what isn’t

10 years or so ago I was on the slow train home from a long meeting in Whitstable. A mate rang to say Fran’s son J had been sectioned and admitted to a unit in East Anglia. Around 140 miles away. He was 16.

I remember crying on that train. Through horror and devastation. Connor was a chunky slice of happiness then. Laughter and joy. He and J had grown up together, sharing school concerts, after school club, birthday parties and get-togethers. Fun, love and family.

J and Connor’s shared birthday party.

When J finally came home, we did what us parents do: tried to change things. Composed letters and emails, pushed for an investigation into chilling failings and better crisis provision in Oxfordshire.

Connor remained a chill pill. Fran captured him making his own lunch one day at hers while we wrestled with the phrasing about sexual assault in a Word document.

Three years later, Connor was in crisis and we stumbled across a nearby ATU. A revelation to local families who had no idea of its existence. We admitted him and he died. [A constant haunting of did we not know about this place because it was known to be shite? And almost worse… if yes, what does that mean?]

We thought, if nothing else, his peers would receive gold plated support from this point on.

Since then J has spent months in ATUs in Wales, Lincolnshire and just outside Oxfordshire. His family have pounded motorways, the phone and internet trying to spring him. Trying to generate appropriate support in Oxfordshire and the life he deserves.

J’s inpatient stays have overlapped with A, another young man from Oxfordshire. Two families. Undertaking the exact same work with the exact same people. Oxford Health, the CCG, NHS England.

Meetings, anxiety, fear, rage, exhaustion, more work constantly chasing up meeting notes and responses. Weeping.

Facing a brutal wall of disregard, disrespect and contempt. Deceit, obfuscation, lack of interest and blame.

These various inpatient experiences have involved over-medication, abuse, injury and deep, deep trauma. And parents who try to negotiate calling out abuse/failings while living in fear of reprisals. Deep powerlessness and frustration. Intense and giddy frustration too easily spun into something else by those sitting at their desks in their well paid jobs, chomping on their M&S sarnies, idly scrolling through emails. Diss/missing parents as irrational, as difficult, as the issue.

I can remember hearing how packed the usually empty car park was in one ATU as the CQC were due to inspect.

I can remember one mother describing how she hid in her car one day to try to catch the psychiatrist who was never on site when she asked to see them. She’d noticed that they had signed in in the visitors book that day.

The fob offs. The lies. The accidental overlooking of emails. The absence of treatment. The harm. The abuse. The trauma…

There was talk of course. So much fucking talk. Of homes being found in Oxfordshire for these boys. Of funding pockets. Grants. Renovations and more. Transforming Care talk. And more talk. Next month. The month after. By Christmas…

All the while emails remain unanswered. There were gaps in information, contradictions and empty promises.

Advice and suggestions from families, self advocates, My Life My Choice and Oxfordshire Family Support Network around developing new models of crisis support over ten years have been ignored. Contact with the higher echelons came to nothing. Ray James. National Director for doing fuck all at NHS England and No Improvement (for certain people).

J is currently at home. With his family living in siege-type conditions. Every day is precarious and unpredictable. A team of exceptional support workers is held together by the glue of Fran, family, love, determination and bloody mindedness.

As I write this, A is being taken by his parents to the local 136 suite on a section 3 for ‘treatment’. The only aim of admission is ‘improvements to the relational security surrounding him in the community’. From here, his family have been advised, an inpatient ‘learning disability bed’ is being sought. A needs a single-person set up and there are very few of these in the country so he could end up anywhere. The last time the family were offered a bed for him in Northumberland – a 6 hr drive from Oxford. For the moment, A’s family are happy he is remaining in Oxford for the weekend and A is happy because they are bringing him some Ratatouille stickers tomorrow.

As to what happens next week, who cares? No really. Who cares?

J and A.

Memory sticks

Slow, slow countdown to July 4. Year seven.

Back in the day I wrote raw, fuck you accounts of grief. Real time, incoherent pain accounting. Trying to translate the unimaginable, unspeakable, incomprehensible into words. Into some sort of coherence.

Writing grief.

Seven years on it feels more like shades of a shipping forecast.

Lighter impact. in terms of dominating everyday life, tasks, being and doing.

Timing. winding and wounding moments, longer spaces between.

Emotional state. tears. water. drowning. sadness.

June 18 and my eyes (heart) have started the random, now familiar, tear filling gig. Working from home/Zoom meetings offer unexpectedly novel passing options. The immediacy of being able to delay joining meetings for a few moments. Of not turning on the camera.

longer spaces between.

I’ve taken to decanting the content of old memory sticks onto google drive. Memory sticks. Tumbling into particular date space clusters: presentations, photos and files. Recalling a conference or ten with seventeen hundred versions of a mediocre paper and flight details. Interspersed with detritus from the last seven years. Screen grabs, documents, reports and more, laying bare the outlandish and unspeakable. Snippets of horror and the inhumane.

Then every so often a photo pauses time.

Thinking photography

Post-death, photos demand forensic scrutiny. The whole shebang followed by a meticulous poring over the minutiae. The cast, the setting, the props, the clothes. The weather, the light. Faces, emotions, action and more. My eyes repeatedly drawn back to Connor. Sit kneeling in that funky way he did. Slightly disconnected from engaging with whatever is capturing the attention of his classmates off camera.

I sit and imagine him going back to his class, eventually getting his book bag, a mini bus journey taking a good 40-50 minutes to travel the 6 miles home and late afternoon/evening unfolding in familiar, unseen, unremarkable ways.

When you have a finite time with your child, each piece of stuff – photo, anecdote, a piece of school work, school diary entry, painting – becomes something so much more than it ever was in the moment. The dustings of unfolding life tend to be lost in the complacency of an imagined forever.

I’ll take shipping forecast grief. And a focus on the good times. Beautiful, beautiful, cheeky chappy.