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?

Bulk buying Weetabix

Tom’s off to Sheffield University today.

The tears started in a supermarket aisle a week or so ago. I’ve been kind of distracted by the timing of the #leder non-response published this week. Pre-publication leakages, conversations and ever present rage. ‘Campaign’ shite as ever bleeding into and polluting key moments. Life moments…

Weetabix

Seven year ago (seven years…) when Rosie went to university I was in pieces. I was a wreck. Blissfully unaware how deep ‘in pieces’ can go.

Will and Owen went under the wire almost, getting degrees with/despite a backdrop of the inquest, other hearings and so much more.

The supermarket thing was around buying cereal. I went to get the bulk pack of 72 Weetabix. Tom’s been a regular daily sixer for years…

‘We don’t need a big pack’, said Rich. ‘Tom’s going to Sheffield on Sunday’.

Nought to 10 on the Sooty tear front.

Eh? How? When? What?

The aisle dissolved.

Years ago Tom said he’d like to live in a house in which the cereal didn’t fall off the fridge when it was opened.

How did we leapfrog from falling cereal boxes to death, bereavement and a massive fuck you fight? Getting to an empty home without the tumbling, bumbling, brilliant bunch of pups who have taught us so much about life, love, decency? Where did the years go?

I miss LB so much it’s sometimes like a kind of careening thing that ricochets (is this a word?) off discordant surfaces and dazzles and blisters an unbearable raw pain. Other times I hold him so fucking tight in my heart I feel the warmth, power and love of an elephant march that brushes aside the relentlessly offensive and grotesque actions of those who should know better (and I suspect do).

Sheffield

Will, Owen and Owen’s partner Catherine pitched up unexpectedly yesterday. They all rock ‘siblingstuff’ in a beautifully understated and full on love way.

Footy watching, Fortnight playing, nosh and banter. I cooked, crocheted and cried.

We’ve landed an ’empty nest’ card we never expected or anticipated. And a set of grown up kids who I love off the planet.

Tom, have a brilliant, extraordinary time at Sheffield.

❤️

[I’m revisiting unpublished blog posts this week. Sorry I started firing them into the public domain earlier without making that clear or realising that blog followers would get a glut of email post notifications. I’m going plod through them over the next few weeks and add commentary where appropriate in bold without changing the original text. Some may be half finished (sometimes without a title) like this one. Written 19.2.15.]

Blimey. Days away from the anniversary of the publication of what we now call Verita 1. The official start date of #justiceforLB. How awkwardly awkward is this? A young dude with epilepsy made worse by medication, has his medication changed in a specialist [howl] NHS secure setting, experiences increased seizure activity noticed by, er, his family. Is left to bath unsupervised within spitting distance of four members of staff (while the other other four patients allegedly slumber) and drowns. Not surprisingly, the independent investigation into his death was damning.

I went to Banbury today for the first time and, in a fresh setting, couldn’t help noticing the tiny manoeuvres parents do to keep their kids safe from obvious hazards like busy roads. Simple stuff.

It was an exemplary fuck up situation.

And?

And?

There is no and. A year later we’re waiting for an inquest, an outcome of a police and HSE investigation, Verita 2 and a Mazars death review. Oh, and staff disciplinary action.

If LB had full citizen status and died in some other way; a road accident, street attack, drug overdose, whatever, the justice process would typically be sorted by now. Another young person, Martha Fernback, died locally around the same time as LB. Someone was found accountable for her death nearly a year ago. A year ago? I read her mum’s book in which she mentions seeing LB’s freshly dug grave in the woodland section of Wolvercote Cemetery that July. When she was choosing a spot for her daughter [howl]. Her daughter who fell into the mainstream justice stream. Without this murky NHS connection.

Not only are we getting no closer to any sniff of accountability for LB’s death, but the ongoing reviews are becoming increasingly meaningless to us. Sloven board paperwork carelessly records that the mortality review [Mazars death review] will be published late summer. Eh? I was reassured only a week ago by NHS England that this was met).

[Published late summer… Gawd. We were so blinking naive. I thought the non action was ‘awkward’ back in the day. That the obviousness of the failings around  Connor drowning in an NHS bath, highlighted by an independent review, would generate kick ass action. [Howl] This is the plan. The long game. A slow smoking out of bereaved families using dirty tricks like ‘not knowing’, endless delay, state funded stinky Pete counsels and the juicy button of ever present, dazzling pain to press and harm. 

The Mazars review was eventually leaked to the BBC ten months later on 10.12.15.  ‘Officially’ published by NHS England (NHSE) a week later. The day parliament went into recess for Christmas. NHSE pulled a repeat stunt this May with publication of the leder report. Attempting to kick unsavoury findings without commitment to action into the long grass. In 2015, Jeremy Hunt answered questions about the Mazars review in the Commons. Hollow answers but ‘answers’ of a kind. This May he simply left the chamber when the leder review was raised.

There’s palpable optimism and resistance in these unpublished posts. It makes me feel an odd combination of sadness and a raging ‘fuck you, you fucking bastards’. So many years passing. So much billy bullshite. Still.

Over the last few weeks in meetings or chats on social media, the ‘high profile’ of #JusticeforLB has been raised. Anecdotes shared. Email comments. A range of people who now know Connor’s name and what happened.

“#JusticeforLB is a social movement. An unprecedented capturing of the humanity of Connor and so many other people. It’s given families the confidence and strength to challenge the death of their child or sibling…” 

Good. Brilliant even.

Revisiting these unpublished posts has made me reflect how easily they could be written today. 

I don’t remember going to Banbury.]

 

Being LB’s mum

Being LB’s mum. I wanted to write this before ‘being LB’s mum’ changes into something unrecognisable. Which I’m sure it will. Because it already is in some ways.

Being LB’s mum. What a maelstrom. What an identity. What a full on, brilliant, intense, raging, frustrating, hilarious, difficult, intense, relentless, remarkable, time eating, pointless, rich, extraordinary, despairing, delightful, fearful, life changing experience.

I hope the pages on this blog (pre-2013 entries) capture some of this.

I think about LB all the time. Pretty much every waking moment. These thoughts jumble around in, as yet, uncategorised, spaces. I hope, as time passes, I might be able to tag them a bit and park em in a bit more of a coherent order. Maybe. Maybe I won’t.

Maybe the breathtaking pain will continue. Maybe it will become something different. No sign of that yet. But maybe. Maybe it will reduce.

At the moment, I just miss LB. My head spins out of control trying to understand why he’s dead.

Our campaign

The #justiceforLB campaign is taking hold.

Good. And a big up to the many people who are supporting it and driving it.

LB’s death remains non-national headline news? Kind of totally jaw dropping. Given the context. An example of what the hell, consigne to the rubbish bin of life’. Worthless. Meaningless and unremarkable.

But, hey, how many “learning disabled” people make the news?

Who really cares?

I loved an earlier tweet  suggesting we were a “bit too real and honest for delicate sensibilities” (@NitramNotram). I agree. We (talking on behalf of a brilliant, passionate group of varied individuals) aren’t constrained by using delicate language.  We tell it like is. We try break through layers of indifference, shake up the lacklustre or misplaced focus of  big charities and cut through the bullshit,

There has been a shedload (decades) of research, policy making, focus on the provision of “support” and “services” for learning disabled people. Talk of personalisation, direct budgets, choice and autonomy. And? Other than the odd dude, most people I know and know of, in “independent supported living” are being short changed, constrained, bullied and experiencing less than acceptable life expectations. Their parents, if they are still involved, are experiencing an ongoing battle to try to improve or maintain the level of care offered.

Completely shite provision/nonsensical, unwieldy, un-person centred, costly systems rule.

Check out Mark Neary’s blog to get a whiff of this in action.

LB died. He is dead. [Some word could feature here but I don’t have any]

We, as family have to try to make sense of what has happened on a daily basis. In agony, pain, distress, senselessness and outrage.

At the same time. Bizarrely, we’re ‘released’ from having to either schmooze or fear some (typically crap hole) service provision.

“Don’t call me crazy”..

Watched the second part of this tonight on BBC3.  I’m seriously developing a reaction to BBC sub-standard, crapshite, sensationalist, exploitative, poor, cheap, shoddy, myopic, tedious [feel free to toss in any descriptors here, they’re bound to tick em all..] type programming.

Wrong. In so many ways.

I’m claiming an insider perspective to comment on this particular series, though I don’t want to review it in a formal type way. I’ve spent enough time (informally hanging out in the lounge/unit/LB’s bedroom) and formally (in the notorious community team meetings) in a mental health/learning disability unit, to offer some insights into the process of incarceration into these spaces.

The footage of the ‘senior team’ meetings was depressing. And familiar. An emphasis on “fake findings”. That is, kind of meaningless findings, that are just non findings. Er, he/she is ‘er, hearing voices’ that ‘er, may or may not be’, ‘er, potentially life threatening’.. Or made up, gleaned from the latest favourite programme, part of an elaborate setting..’ The tendency of ‘professionals’ involved to seize on what they recognise from their training, rather than engaging with what they were hearing from the young people talking to them, was crap.

I’m weary of tripping around being the mother of a child/young dude like LB. There is no space to say to say ‘this is shite, don’t waste our time’. Even though it often is.

Investigation and observation fuelling/feeding off/creating/generating issues. Common sense ditched in favour of sensationalist/overblown/salary endorsing nonsense that painfully left family members at sea and ‘patients’ lost. Experiences were framed in a pathological/medicalised way that left no space for creativity, originality, difference despite constant background footage of community, engagement, enjoyment and sociability.

A set of beings and behaviours packaged into a tight, awkward and wrong fitting set of parameters.