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Who By Fire

Monthly Archives: Jul 2015

Tempus fugit.

20 Mon Jul 2015

Posted by Kara Chrome in Uncategorized

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Tags

appropriate vocabulary, learning disability, true stories

Grenouille: Knock, knock!
Me: Who’s there?
G: Boo.
Me: Boo who?
G: Don’t cry, it’s only a joke.  (G falls about laughing).  Mum, why aren’t you laughing?
Me: Well, I know it’s your favourite joke, and you find it very funny, but I’ve heard it so many times, the funny has sort of worn off for me.
G: Tell me a joke I don’t know.
Me: Um, OK, why did the boy throw the clock out of the window?
G (full of confidence about the structure of this one):  I don’t know, why did the boy throw the clock out of the window?
Me: Because he wanted to see time fly.
Pause.  G’s face is absolutely expressionless.  Then the brows draw together slightly.  I tense.
G:  
What happened to the clock?

Talking Template Turkey.

14 Tue Jul 2015

Posted by Kara Chrome in Uncategorized

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LB Bill

Dear MP

I would thank you for the courtesy of replying, however belatedly; but it’s not exactly courteous of you to reply using a stock PR template answer that makes it painfully obvious that you have neither read my original message, nor bothered to consider the issues involved, is it?  It’s dishonest, since you are trying to convey an appearance of caring when you patently don’t consider it a worthwhile use of your time to give two (genuine) hoots; and foolish, because it doesn’t take even average intelligence to spot the discrepancy.

Would you like to start again and do it properly this time?

While the Bill has not, as far as I know, been taken up since the Ballot, I would be grateful if you would actually look at it and let me know how you consider its provisions could be used to improve any future legislation, such as that which may arise from the Green Paper ‘No voice unheard, no right ignored’.

I would also be obliged if you would let me know whence you obtained that template response you sent me.  It is, regrettably, seriously at odds with the facts in several respects, and needs to be corrected at source.

The Disabled People (Community Inclusion) Bill 2015 aims to build on the provisions of the Care Act in order to put into effect the aspirations of the post-Winterbourne View JIP and similar programmes, to ensure that nobody is sequestered in unsuitable accommodation simply because there is nothing appropriate available.  If enacted, it will give disabled people, like my younger child, the same sort of choice and control over living arrangements that non-disabled youngsters can reasonably expect to have.  The provisions of the Bill are needed in addition to the Care Act, to give effect to disabled people’s autonomy.  Those provisions are also more appropriate to the lives (as opposed to the healthcare) of disabled people, than the suggestions in the Green Paper ‘No voice unheard, no right ignored’, which are heavily medically-oriented.  Finally (and this is where Connor Sparrowhawk and the ‘LBBill’ informal title come in) the Bill’s provisions differentiate between learning disability and mental illness.  While an illness can co-exist with (and even on occasion cause) disability, disability is not an illness and should not be considered as one.

 The conflation of ‘learning disability’ and ‘mental illness’ was one of the errors that led to Connor Sparrowhawk being sequestered for an unnecessarily long time in a dangerous Assessment and Treatment Unit that neither assessed nor treated him, and where his physical neurological condition was ignored, with fatal results.  It was only after the second – family-initiated – post-mortem examination, that signs were found that before he slid unobserved under the water in his NHS bath and drowned, Connor had probably had one of the tonic-clonic epileptic fits from which he was known to suffer.  Meanwhile, the Trust responsible for Connor’s care in the ATU, Southern Health, was publicly stating that Connor died from ‘natural causes’, even before the first P-M results were known.

As for apologies, Southern Health’s performance has been superb on the non-apology, the near-apology and the not-quite-an-apology, but decidedly underwhelming on the genuine regret, remorse or redress.  In any case, even the most fulsome apology looks merely perfidious when, as Southern Health has done, the apologiser subsequently puts up (expensive, taxpayer-funded) Counsel at the inquest to argue that actually they were not at fault in any way because death by drowning is ‘natural’.

Of course neither Connor nor his parents were your constituents and I do not expect you to focus in-depth on them and their situation.  I do, however, think it reasonable to expect you seriously to consider your own disabled constituents and respond to actual queries raised about possible legislation, rather than buying in a template PR response that does not address the issues brought to you, and which bears all the hallmarks of having been given a Southern Health-style mendacious spin-gloss.

Yours sincerely


Kara


WhoByF1re Hovel

YourConstituency
XX9 9XX

From: MP
Sent: Monday, July 13, 2015 4:57 PM
To: Kara
Subject: DISABLED PEOPLE (COMMUNITY INCLUSION) BILL 2015

Dear Ms Chrome,

Thank you for contacting me about the #Justice for LB campaign. Please accept my sincere apologies for the delay in writing back to you.

Like you, I was greatly saddened to learn about the case of Connor Sparrowhawk. I understand that post-mortem findings have shown that that he died as a result of drowning, likely to have been caused by an epileptic seizure.

I am deeply sorry that Connor died whilst in the care of Southern Health NHS Trust who I understand have acknowledged that they failed to undertake the necessary actions required to keep him safe. I think it is quite right that the hospital has now apologised unreservedly to Connor’s family.

I have been made aware of the proposed Private Member Bill. I think it is an important contribution to the ongoing debate about how we best improve care for people with learning disabilities. You may be interested to know that during the last Parliament, the Department of Health held a consultation called ‘No voice unheard, no right ignored’ which looked into precisely this issue. In particular, it included a section called ‘My right to be independent, to be part of a community and to live in a home I have chosen’.

I hope this is an area that the newly elected Government will choose to examine carefully before deciding how best to support and care for patients.

Thank you once again for contacting me about this important issue.

With best wishes,

Given-name

Given-name Surname MP
Member of Parliament for YourConstituency
Parliamentary Private Secretary to Rt Hon Big Cheese MP, Secretary of State for Uh-Huh
<email-address> | <wwwebsite> |   <twitterhandle>

Taking LB To The Opera.

06 Mon Jul 2015

Posted by Kara Chrome in Uncategorized

≈ 1 Comment

Tags

#107days, #justiceforLB, Connor Sparrowhawk, Rossini, William Tell

After spending nearly five hours (with intervals) watching Guillaume Tell at the Royal Opera house this afternoon/evening, I am feeling gloriously, utterly saturated with music.  My brain is swirling with twelve-part harmonies and top C’s, I have melodies leaking from my mouth and my pores; I swear if you put your ear close to my skin, you would hear faint echoes of horns and harps.

Tell was the first grand opera I ever sang in (chorus, sixth first-alto from the left).  It was simultaneously a première and a pinnacle for me, because I can’t think of another opera where the chorus is so much of a character in its own right, or where it gets to spend so much time onstage and sing so many different kinds of music – legato pastoral tunes, solemn hymns, jolly folksy dances, pleading prayers, martial fanfare tunes and skirling defiance; and most of those several times over in different numbers.  The company needed to mount a production of Tell is mind-bogglingly huge – a dozen principals (to include a tenor who can nail 19 top C’s per performance); women’s chorus; double men’s chorus (because the worthy Swiss peasants and the dastardly Austrian soldiers are onstage simultaneously for most of the big numbers); dancers; an orchestra with a minimum of flute; piccolo; two oboes; a cor anglais; two clarinets; two bassoons; four French horns (in two different keys); two trumpets; three trombones; a full string section (including at least five celli), a harp; and, in the percussion, timpani; bass drum; and cymbals.  And, of course, a triangle.  That’s before even starting on backstage and front-of-house staff.  With so many people involved, the excitement generated was intense, so much so that when I hear the music I can still feel the frisson, half a lifetime later.  We had to be onstage, behind the curtain, before the house lights went down; and remain immobile and silent through twelve-plus minutes of overture.  On the first night, the tension was too much for our William Tell and he relieved his nerves by doing a Chuck Berry duck-walk across the stage in time with the loud part of the ‘Lone Ranger’ section, only just scuttling back in to position in time for curtain-up.

As soon as I saw that Covent Garden’s Royal Opera House was putting on a full-length production of Tell this year, I began dropping very heavy hints about how much I wanted to go and see it.  And because my children’s Papa is an exceedingly lovely man, he booked us tickets, even though opera is very definitely Not His Thing.  Not only that, for my birthday, he bought me a copy of the lush 1973 recording featuring Nicolai Gedda and Monserrat Caballé, letting me reacquaint myself with the music (and incidentally get my regrettable tendency to sing along right out of my system).

It was while listening to the recording that it dawned on me that LB was going to come to the Royal Opera House with us, two years and a day after he drowned in that NHS bathtub.  LB drops in on me fairly often.  I see an Eddie Stobart lorry: I think of LB.  A bus goes by: I think of LB.  I visit London: I think of LB.  How could he not be there, when a story of oppression, untimely death, injustice and resistance, is being presented in his favourite city?

I thought beforehand that if LB was anywhere in the production, he would be in the spine-tingling Act 2 lament ‘Ses jours qu’ils ont osé proscrire’, (and would probably make me cry – again) but I was quite wrong.  Director Damiano Michieletto had decided that Arnold would not mourn ‘Je ne te verrai plus’ into the usual middle distance void, but would sing to a ‘ghost’ that was in fact the actual actor who had played the murdered character.  Large as life (obviously) and just as (obviously) substantial, he left no space for LB to occupy.

It didn’t matter.  I saw glimpses of LB in Gerald Finley’s square-jawed determination, in John Osborn’s dark curls, and Sofia Fomina’s adolescent-boy awkwardness.  He was in the resonances of hope, rage, fear, despair, mourning and then new hope, enduring love, a desire for justice and a resolve to pursue it to the end, that reverberate through Rossini’s music and which might have been written with the JusticeforLB campaign in mind.

In any case, LB is not a man to wait until Act 2 of anything to make his mark.  No.  The first person to be seen at the opening of Act I Scene 1 is the schoolboy, Jemmy.  He sits, isolated in his circle of light, head down and cocked sideways on the table, totally absorbed in playing out a complicated story with his toy figures.

Hello, Connor.

I cried.

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