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.

A week in lockdown: shiftiness and jogging on

Lockdown so far: I gave up drinking and started running. Couch to 5k. I gave up and started again. Baby drinking. And running. Badly.

Monday. NHS England said they weren’t going to publish the COVID19 death figures of learning disabled and/or autistic people. The data would be packaged in the 2021 Leder review. Leder 2021. While deaths continue. Unacknowledged.

Running. 1.5 minutes. 3 minutes. Week 3. The same run three times. A lot of walking.

Wednesday. A shift in position. The data would be bunged to Public Health England (PHE) for analysis. A masterclass in vagueness. Careless shiftiness. Rebecca Thomas wrote this piece quoting PHE Director, Dr John Newton.

‘More likely to have health problems…’ says Newton, casually revealing ignorance underpinned by prejudice. Grim combo in anyone. Terrifying in a senior public health figure. How in the actual hell on a mouldy cracker drizzled with stench cream can you direct Public Health England without a scooby about health inequalities?

‘Any findings will be considered’ he added, stating the bleeding obvious. Only there is no bleeding obvious for certain people. Only hard won baby steps which remain under the constant shadow of obliteration. Also in the piece, Tim Nichols fights for a seat for autistic people at the death stats table and the new Mencrap ‘leader’ chips in with a weak, throwaway ‘it’s unacceptable’. [Of course it’s unacceptable. Is this really what you get for a three figure salary?]

An anonymous, hate filled comment under the article was removed after intervention by people on twitter. ‘They bring it on themselves, getting special dispensation to go out more than other people, killing people by their actions…’ This is the gist. Paraphrased.

There is no bleeding obvious. There is no collective outrage around inciting hatred of certain people. COVID19 is like a lightening rod, generating viciously bright sparks illuminating what those in the know know. Have known for decades. And yet it still it takes pressure to make people turn their heads. To encourage people to see what is now grotesquely visible. A labour that never ceases, never eases. Despite the solid and equally committed collective of allies, self-advocates, families, education, health and social care staff, politicians, human rights specialists, journalists, academics and so on.

Thursday. A small group of these concerned citizens got in touch with some of a core of legal experts leading legal challenges to the current denting or worse of human rights. Could the decision to not publish the data be judicially reviewed? Apparently so. At the same time, Harriet Harman wrote to Hancock requesting the data be published:

Running. 1.5 minutes. 3 minutes. Consistent and steady. Well thought through. No sudden movesPlenty of walking.

Friday. The Medical Director of NHS England and Improvement [for certain people] said the data from acute hospitals would be published during the daily press briefing. No other news. No mention since. No update published online. Nothing.

This week local BBC ran a piece on Soundabout:

It is truly joyous. I catch the bus to work with Sam sometimes (had no idea he is such a fab singer). He works at Brookes at Harcourt Hill and catches the U1 because he likes the stop announcer’s voice. I’d never noticed her before. Have a watch with a cuppa, and maybe a choccy bic or two, and tell me some people don’t count.

Then think about the shoddy and slippery way some people’s deaths are treated. People who almost inevitably lead shortened lives because of the way they are treated in life.

[More on the legal action later.]

Superman and the starship

Dominic Minghella wrote a powerful post recently called ‘Eleven days in March following on from the equally powerful ‘From the dark end of the street’ in which he describes his experience of COVID-19

In his latest post Minghella calls out the government for the eleven day gap between knowledge and action. A period of explicit herd immunity, ‘last gasp of breath’ commentary and the hand of Cummings. Minghella says:

Incredible, isn’t it? Thousands of people suffering or dying or grieving because of those eleven arrogant, stupid, murderous days.

…those eleven days show us that our government has form. Left to its own bewildering devices, it makes terrible decisions.

This gap is now at nearly 40 days as more experts wade in and call out grotesque government inaction. It seems clear that a mis- (or deliberately) guided policy initially focused on the economic (and eugenic) belief that a chunk of ‘burdensome’ people dying through lack of immediate action was no bad thing. A speech by Johnson in Feb highlights his belief that the UK should be the country to soar Superman-styley during the pandemic. Going boldly where no country has gone before.

For disabled people and their families the pandemic has generated an additional layer of fear and terror. Being considered not worthy of life is a jobbing hazard when you don’t fit narrowly defined normative expectations of what it is to be human and it wasn’t long before people were receiving template DNR forms. While we don’t know the number of deaths in care homes and residential settings, it’s obvious this group of the population have been left without adequate care, attention or protection.

In a recent publication, medic David Oliver suggests blanket DNRs are an issue of ‘poor choice of language and a depersonalising style of communication’ rather than a deviation from the general principles of  choice between life and death facing medics:

Oof. Way to go Oliver. Spoken only from the comfort, superiority and safety of not being on the Does Not Count list. A group of disability rights campaigners have launched a legal challenge around the failure of the government and NHS England to publish guidance on how NHS treatment for COVID-19 will be prioritised if demand outstrips supply. We want a bit more than medics ‘choosing carefully’.

Of course, learning disabled and/or autistic people have been suffering or dying or grieving for decades of arrogant, stupid, murderous days. Terrible, terrible deaths. What we are currently witnessing is mainstream bods experiencing what disabled people and families experience as pretty much normal across their (typically shortened) lives. A gut wrenching dismissal of human life through a combination of greed, ignorance, disinterest, fear and arrogance.

There are some green shoots [I know] however. Signs of enlightenment and a wakening and warming of attitudes to difference. Channel 4 News covered the legal challenge live yesterday in cracking coverage. Sky News, similarly, ran with a serious fist pump moment:

A man. A beautiful man. And his family.

Human life.

We have to ask ourselves what the woeful response to COVID-19, leading to countless, devastating deaths, is revealing about the treatment of and response to different people. Reflect on the enforced, widening recognition of what it’s like to be treated like complete and utter shite. As dispensable and disposable. We have to think about what this means about us all as individuals and as a society. And we need to make sure we don’t lose this small light and the too rare tumbling of the marginal and the mainstream.

An honorary graduation

Crumbs. This was last Friday now. A wondrous day, memories of which have almost been punted over the fence with a right old ‘knock the stuffing out of you’ type cold this week. Oxford Brookes University wanted to award me an honorary doctorate. A letter from the Vice Chancellor last June. Blimey. A week before the 2018 graduation ceremonies I assumed someone had dropped out at the last minute.

‘Oh yes, I’m around all next week’ I replied… [always the dependable and practiced filler-in].

The invitation was for 2019. A bone fide jobby.

I headed down to Brookes in early morning sunshine with Rich and Rosie. The day started a bit stressful as I realised I should probably get a copy of my 6 minute speech printed rather than stick my phone to my nose during the ceremony. And Rich pointed out a ladder in my tights.

Mike across the road obliged with the printing after replenishing a print cartridge while Rich bought a selection of tights from the local Co-op (which has consistently featured on this blog).

We met up with my mum and dad outside the main Brookes entrance and got swept up by Beth Hill, Events Manager, who looked after everyone, did a stonking job of erasing stress and made me feel like a legit honorary graduate with her humour, warmth and sass. A walk through the ceremony, gown on, professional photos (the first since I was at school) and non stop pep talk.

There was a moment when she took me into the hall before the ceremony. An unexpectedly rebuilt version of the space I graduated in 18 years ago. A time when life had different texture, tone and colour. And a beautiful young dude bouncing around in it.

Beth had a vice grip of understanding (physically and emotionally) because she does.

What seemed like moments later, a ceremonial entry through a hall heaving with students, families, love, pride, excitement and achievement. Professor Jeremy McClancy (love him) nominated me for the award. In his introduction he said the job of academics is to enable students to become active, critical citizens who act on the world and he couldn’t think of a better example. [Sob] I sat in a sea of memories from back in the day. The enormity of everything, my heart swelling and utter sadness was something else.

Then it was time find the white cross on the stage, be given a framed certificate by Pro Vice Chancellor Anne-Marie Kilday, have the certificate magicked away and pointed towards the lecturn. Speech printed and carefully folded in my pocket.

‘You’ve got this’, said Anne-Marie, firmly.

Yep.

It was an unexpectedly extraordinary day; moving, powerful and fun. Rich, Rosie and I spent a lost and lazy afternoon sitting outside a rooftop restaurant in the sunshine. Eating, talking, drinking fizz and chuckling… We went home and slept soundly spread across settees.

I so appreciate the warmth, delight, support and recognition of staff who taught me back in the day at Brookes. Those rollercoaster years of juggling young pups, study, diagnosis, despair and ways of making sense of what seemed, at the time, to be unthinkable. Years that had a preciousness we didn’t understand at the time. The comments from parents and students on the day were equally warming. A resounding ‘thank you’.

Last night David Harling published his latest animation Not from Where I Stand. More brilliance capturing the strands of service brutality and the awesomeness of people like Connor. This week has seen cracking campaigns/developments #strippedofhumanrights, #homesnothospitals and #SENDnationalcrisis. Movements, action, collectivity and commitment to improving impoverished lives.

Who knows, maybe the tanker is turning.

The Stobart Affair

The joy generated across the weekend on social media was snuffed out earlier when the Eddie Stobart company announced it wouldn’t name a truck after Connor (despite hundreds of tweets putting his name forward in response to their request for names). The Head of Comms messaged to let me know the ‘no’ last night. Girls names only. We had a brief exchange before I went to bed with a seriously heavy heart. I missed a call from a journalist during a meeting this morning and came out to a BBC report of the news. The story was updated across the day to include the names of men – Lee Rigby, Valentino (Rossi) – who have been named on lorries and a character called Optimus Prime. A Transformer.

The same BBC journalist rang back later and said “You seemed so… so joyful really, in your (blog) post at the weekend. Like you thought it would actually happen…”

Yep. I was and I did. Other people seemed to think so too. The twitter response was an example of the magic generated when a diverse set of people step up and act. The kind of action identified in the Civil Societies Future inquiry report. It involved people who had never met Connor and those who knew him well. Like Deekz:

What’s an Eddie Stobart truck? Er, handing over to Connor here… a loyal, loving and dedicated advocate for all things Eddie Stobart. I was also reminded of this blog post I’d forgotten about; The Eddie Stobart Story. Wow. This must have been when he left the condolence message for Eddie Stobart. [Howl]

By this afternoon my timeline was full of tweets expressing surprise, disappointment and bafflement at the news. Not surprising really. [Why not?]

Some of the key ingredients (for me) of the collective action witnessed in the support for Connor this weekend, and in the civil society stuff, are love, humanity, kindness, community and understanding.

Love, humanity and warmth were fuelling further love, humanity and warmth. The fire burning bright for the Eddie Stobart company to do the right thing.

It would have been so easy for senior Stobart bods to reflect on the extraordinary and unprecedented response to their tweet, do a quick google and decide to chuck their (flaky) name policy out of the window.

A Transformer…

So blooming simple.

Why not?