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.

The bathroom renovation

Part 1

The bathroom renovation. An extension built fifteen or so years ago thinking about LB’s long term future. A downstairs bedroom and bathroom (always surprisingly) reached through a door under the stairs into what was a narrow garage.  A never quite [don’t ask] finished space steeped in emotion and history. ‘Valuing People’ an unformed kernel of an idea back then. ‘Still Valuing People’ to come. Still.

A failed attempt to complete it a few years after LB’s death. And silence.

Now. The clear out. Shelves of untouched stuff. Dust art installations to fascinate, intrigue, repulse. How does undisturbed dust work? Shake down, replenish and/or pile up?

Who is this little fella in a glass?

“The glass is from the Queen’s coronation” offered Rich.

A 68 year old glass. Seven years of dust. A mystery figure. [And 107 days…]

Sadness and excitement about reclaiming the space.

Part 2

This morning. Just after 7.30am. Shaken awake from strike slumber in a panic of door knocking and dog barking.

Christ. It’s the builder.

You go.

You go.

We grub around for bits of clothing in the dark.

He’s early.

Yeah. That’s a good sign.

Yeah.

I run downstairs and open the door.

Paul.

Sara.

Sorry, I’ve not been well. I may have to leave to get to the hospital quickly.

Crumbs, sorry to hear this. You shouldn’t be at work.

I’d rather be working to be honest. I’m fed up with doing nothing at home. I just can’t lift anything heavy. 

I offer him a cuppa. He’s not allowed fluids other than water before 10am. He’s brought water with him.

“What’s that face for?” asked Rich coming into the kitchen.

Nothing.

Part 3

We learn fragments of Paul’s life across the day. Family, health, (not) stockpiling bog roll and stories from decades of renovating bathrooms. A second builder pitches up to help. His wife texts to check on him. I learn about the technical background to the extension and plumbing failings. No damp stone is left unturned.

Love, quiet graft and commitment fills the space. And, with no whiff of cheesiness, hope.

Stolen time, mother blame and writing back

 

Gawd. Not written a blog post for what seems like yonks. I think this is a good thing. I’ve also been on strike for what feels about a decade which is generating unusual space to think and reflect about stuff.

This morning crafting vintage crochet squares my eyes/thoughts drifted to beautiful, beautiful photos of our kids. And reflections about stolen time. Time spent enduring accountability processes, on fighting, meeting, demanding, researching, reading, raging, reading, raising, howling, meeting, missing, fighting, raging, howling and missing. Missing so bloody much.

I totted up one strand of this stolen time.

It is unnecessary. These processes shouldn’t take years. Or force families to become almost vigilantes in pursuit of justice.

I also thought about the tenacity and strength of the tentacles of mother blame that continue to try to drag me/us down. Me/us flagging here how the ‘mother blame’ stain works to circulate a narrative of ‘unbalanced woman’ disconnected and distinct from a loving family and friends.

Undertones, hints and hammers 

The still busy blame work continues across diverse settings and spaces. Examples from the last few weeks:

A comment in a Hampshire newspaper. Mazars a tool to discredit one trust or just to appease a certain someone?

A Facebook discussion. What worries me is her being in this position of power over very vulnerable people and seemingly completely unaware of what’s she’s saying.

Disproportionate indignation and the personalising of a wider, independent work outcome.

An extract from a draft manuscript in which a senior exec is portrayed as victim in contrast to an obstructive mother who really should have been offered grief counselling early on.

Writing back

A form of writing back, to borrow from post-colonial literature, is part of my/our personal, academic and activist life. Rich and I talk about it. Katherine Runswick-Cole and I have published about it. #JusticeforLB ran with it and, with George Julian’s clear vision, generated new ways of being, doing and acting.

Writing back is about trying to redress oppressive and enduring imbalances. Of reappropriating and resisting harmful discourses. Shades of refrigerator mothers, accusations of hysteria, irrationality and, ironically, imbalance.

The techniques available to public sector bodies wanting to silence people include discrediting, crushing and co-opting. In this order. I was never big on titles or throwing about my business so early attempts to discredit were short lived. Hints of a generic single mother on benefits are hard to sustain when you are married with a senior academic post. From being invisible, the Dr (‘Dr’) title assumed almost comedic proportions as events unfolded.

Attempts to crush are woven into the fabric of accountability processes as well as the everyday actions of senior health and social care figures. No funding for legal representation at inquests without punitive and intrusive scrutiny. Interview transcripts with NHS staff with sub-sections titled ‘My Relationship with Dr Ryan’. The secret review by Oxfordshire County Council in which the author spoke to everyone but us spinning a teeth achingly biased yarn. The commissioner’s letter about the terrible harm ‘my’ campaign was causing. Countless crushing examples.

Co-opting can be an effective tool in terms of maintaining the status quo. Selfie slide shows of families with ministers, politicians, big charities… People sign up to working with different strands of health and social care to generate change, working with and influencing from the inside. Rich and I dipped our toes into the co-opting pool. Both were short lived experiences as futility shone through. Outrage and incredulity this week from long term National Autistic Society supporters as the penny finally dropped. This is a corporate, self-serving beast.

And what if the silencing techniques don’t work?

Mmm. This has been a ponder and a half. The following point all overlap…

If the techniques don’t work you are not playing the game. You are at fault.

If you remain uncrushed you are clearly not assuming the appropriate, culturally ascribed role of grieving mother. You are stripped of feelings, your bereavement stolen.

People you’ve never met develop a strong and irrational (again heavy on the irony) dislike of you. A disproportionate monstering. A danger to others…

If you resist co-opting there is no resolution. And there is no resolution if you don’t. Superficiality of ‘improvement’ efforts continue with an ever ready queue of co-optees while necessary structural and cultural changes remain untouched. From the outside we don’t have the distraction of insider tinkering and remain a nuisance.

Finally, and what gets lost in all of this, is bereaved families are the only interested parties, to use coronial language, who are typically not directly connected to or part of what happened. This makes the attempted silencing and subsequent monstering all the more monstrous.

The end. For now.

[Please chip in with comment, reflections or criticism; these are very much half formed thoughts.]

Quest Craven and the end of a decade

I’ve drafted posts on paper, on this blog and in my head on and off for weeks and months now. And kind of enjoyed not posting them. It feels right. I may revisit some of these ghost posts. Or not. Some (many) are about (malingering) grief. About the intense pain and sadness I feel. And always will. With patches of pretty much happiness. That’s cool. I don’t want to always be Captain Bringdown. I remain in awe of feelings of contentment.

I’ve got a sort of manageable grief gig thing going on that kicks in along my walk to work in St Aldates. A space of enormously wide open sky. Taking in an ever present smorgasbord of coaches outside the Ashmolean. Mentally ticking off the die cast models LB collected while acknowledging post-death models he could only dream of. The road ahead leads to the cemetery.

Tonight I want to write about one atrocity story. Before we leave this decade.

Back in the day I would likely have laid out the pre-story to this. In considerable detail with links, drawings and other illustrations. [This blog with JusticeforLB.org and 107daysofaction produced by George Julian will no doubt provide a weighty and comprehensive account of the utter shite that passes for health and social care for certain people in the 21st century. Ripe pickings for students to unpack in years to come.]

I’ve lost my appetite for up to the minute documenting. For calling out, calling on, demanding, raging and howling at the moon and the stars. Six years on the resounding response in terms of demonstrable action is ‘we really couldn’t give a flying fuck’.

The swears no longer work.

Quest Craven

This is a story about a private provider called Quest Haven who run two ‘care homes’ for learning disabled people in Surrey (amongst other ‘care’ related practices). I strongly urge you to:

  1. Have a graze of the CQC inspection report highlighting the harrowing failings in anything approaching what could be described as ‘care’ in one of the two properties.
  2. Reflect on the longevity of this company (set up in 1997) and the fact that until November 2019 the Directors (three members of the Tagoe family) claimed to be Registered Nurses.
  3. Have a look at the Quest Haven website.
  4. Note that the claimed Registered Nurse status of all three Directors has now been revised to, er, not Registered Nurses. The Directors of this private provider were all faking their credentials.

Apparently the Nursing and Midwifery Council and Care Quality Commission couldn’t give a flying fuck about this fakery. Classy bunches as ever. We have no idea how widespread this practice is and the limp response suggests there is little or no appetite to root it out. Particularly, I suggest, when those receiving the non care are of so little value. Tinned mac n’ cheese on a budget of (an estimated) £3k+ a week is apparently rock and roll.

So, as we enter the third decade of the 21st century the appetite, guts, knowledge and integrity necessary to shift entrenched failings in practice and support remain elusive. Talk is talked. Big salaries are drawn among public and third sector organisation bods. Family members continue to be co-opted and effectively silenced.

Meanwhile in a bungalow in Surrey people continue to be treated like shite by fake nurses who don’t know their care arse from their elbow. Quest Haven rakes in the readies as commissioners across the country remain apparently glad to wash their hands of ‘troublesome people’. A regulatory and commissioning system continuing to choose to look the other way.

Way to go. Way to fucking go. We need a new plan for the next decade. One that does not bolster and help sustain this rot.

What do you do with those tears?

I sat on the Oxford Tube heading to London this morning. Beautiful, beautiful, warm sunshine. Listening to an accidental playlist I don’t remember making. As we approached Lewknor unexpected tears kicked in. Alan Silvestri’s Forrest Gump? Christ. Silent weeping at the back end of a packed coach to London. 

I started the surreptitious eye wiping routine. Left cheek. Swift wipe with the back of the hand. Wait a mo. Right hand, right cheek. Swipe. 

The woman sitting next to me studiously studied a Housing related journal. Two beautiful young boys on the other side of the aisle silently swung their legs, gadgets charging. Absorbed in technologies that weren’t a distant speck when we used to chug up to London on days out. Bus and heavy haulage spotting. Waiting to get there.

Are we nearly there yet?

I stared up at the skylight trying to back the tear flow. A half arsed study of sky through dirty streaked tinted plastic. Forrest Gump. Where did that come from? Those fucking tears. Falling in a space of strangers.

What do you do with those tears?

The Bayswater Road was closed. I got off at Shepherds Bush.

Wave for Change Day. Muswell Hill. Mixing, mingling and fun. Thorny issues around who speaks for who discussed in a space of openness and acceptance. I rolled with the waves. Listening to people talk about lives and experiences. Imagined futures and fears.

My phone ran out of charge on the way home.

Home.

I turn to memories. Dusty photos and love. The kind of love that makes tears tumble at the drop of an unexpected tune.

Pembrokeshire. Circa. the good times. Paddling in the shallow shallows. Orange binoculars. Early Learning Centre police tabard. Baseball cap. Hoofing up your shorts. Living your best life.

I love you.

Videy Island and the Bravo bar

A short ferry hop to Videy Island, a small, beautiful island packing a punch and cracking cup of hot chocolate. The first building built of stone in Iceland. A space of blues and greens and heavy clouds. Shades of grey and layers of mustard. Last ferry back 6pm.

Given the Reykjavik coach tourist industry we kind of assumed a lot of people would be tramping round Videy. It was deserted. A couple of people on the ferry we never saw again and the odd figure in the distance.

So much to see, absorb, wildlife, wildflowers and silence. Dotted with artwork and memorials. Yoko Ono’s Imagine Peace Tower; a blue light installation visible between 9.10-8.12. Fifteen men died when HMCS Skeena sank off the island in 1944. Einar Sigurdsson and rescue team saved 198 men via a line secured to the island over several hours during the storm. The men who died set off on floats before the ‘abandon ship’ call was cancelled.

Later, the Bravo bar. Pints of Viking and brighter colours. Reds, yellows and orange. Turquoise and sunshine.

Eight days in Reykjavik (2): Approaching Videy Island

Day 2. Rain. Solid, grey, vertical rain. And little response to it. No dramatic posturing, rushing or jostling in doorways. Locals and tourists, snug in a smorgasbord of artic-type weather gear, ran with it. Without running. We walked to Laugardalslaug public pool. Twenty minutes along an office lined road into a neighbourhood of grey, pebble-dashed chunky residential buildings with open garden areas. Scattered bikes and BBQs.

I learned the pool rules during my summer research: shoes off outside the changing room; naked showering with important areas for suds highlighted in posters; cozzy back on and out.

I hadn’t realised two shower inspectors would sit in a booth opposite the open shower. Minutes later, after asking a few, nerve generated (did I pass muster on the sudster?) clarification questions answered with charm and politeness; “Er, you can take your towel if you want but it is raining outside”, we were basking in a steaming geothermal pool. The now light rain peppering our faces.

That evening we discovered ‘happy hour(s)’ in the Bravo bar on Laugavegur.

Day 3. The sun was out. We had a plan. A trip to Videy Island. Would you just look at this:

Mount Esja beginning to reveal unimaginable strength and beauty. And Videy Island that thin slice of mustardy coloured land laid out in front of her (although we didn’t realise it at the time). A walk around the headland to find the ferry port.

No words really. An Icelandic director’s house next to the Sigurjon Olafsson Museum and artwork to graze en route. Heavy haulage action I could only dream of talking to Connor about. And a short wait for the ferry across to the island.

Postscript. In writing these posts I keep coming back to the composer Olafur Arnalds.

Particularly this:

He apparently refused to translate Georg’s poem because it would lose some of its beauty.

Eight days in Reykjavik

Eight days in Reykjavik*. A long time for us to be on holiday. In a city with temperatures around 10 degrees and steady rain forecast. We went plan-less having planned the trip the whole summer. Hiring a car: ditched. Iterations of the same tour in a range of different colour and sized coaches: ditched. Temperatures steadily rising at home. I stopped googling. And reading.

Day one. A five minute walk to the sea early morning and glimpses of Mount Esja beneath heavy clouds. Following the sea wall alongside a dual carriageway and backdrop of highish rise flats we passed the opera house and reached a picture postcard harbour. Whale a minute!  This was never in our non-plan.

Kitted out in thick red onesies, goggles, life jackets and gloves we were bouncing out to sea on a speedboat within 30 minutes. Our guide a Prisoner of Cell Block H guard type with layers of understated charm, humour, orders and persuasion. Vertical arm for help. Horizontal arm and clock position shout out for whale spotted. The puffins had pretty much left for the winter. We waited, engine off, bobbing in the North Atlantic. Grey drizzle. Deep, dark waves. Exhilaration, joy and intense horizon studying. Minke whales and a porpoise dolphin whale pitched up, late season. Thank you.

That first day was particularly blue. With tots popping up in the nearby Punk Museum and a shop window display.

*There’s a kind of non back story behind this.

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.