Archive for the ‘Disability’ Category

“Statistically Improbable”

This is short one.

Statistics rarely throw up an “impossible”.  You merely have an “extremely improbable”.

Now, consider this.  There are four high profile disability campaigner/bloggers who I follow on the web.  Three use wheelchairs, one campaigns essentially through their family circumstances.  This oversimplifies the matter and for that I apologise but it is sufficient for them to be able to identify themselves.  Their work is exemplary, an education to read and digest and not only a source of wisdom, but of wit also.

Now, in the last month or so, be it the Paralympic honeymoon period that non-disabled people had or the increased effects of substantial campaigning on disability-related issues, but these four campaigners suddenly have the stage, front and centre and are more publicly showing themselves to be a thorn in the powers-that-be’s side.  Dispatches, even the increasingly Squealer BBC to the Napoleon of government put out a Panorama that didn’t do the Eton Mess of government too many favours.  The tide of anti-disability sentiment is suddenly spotlighted and it’s making for uncomfortable feelings in rarified circles.  And the pressure continues.

And then suddenly, all four find themselves under attack on blogs, Twitter, they find themselves being stalked, reviled, abused and their young family even been thrown into the mix.

Statistically, this is extremely improbable.  Nuisance to government and increased personal attacks.  There appears to be a correlation.  It isn’t “impossible”, statistically it cannot be,of course.  Merely “extremely improbable”. 

I don’t believe in conspiracy and I don’t believe in coincidence.  I do believe there’s a smear afoot.  Draw your own conclusions, I’m reconciled with mine.

Cameron’s Leveson Floor Show plan – not for circulation

10.30 Couple of one-liners, make a pun or two at the expense of aspiring backbench (backMensch? LotsOfLove) toadies. Warm up, ask the crowd where they’re from, hope it wasn’t somewhere where I destroyed SureStart or Remploy

11.00 Sing “I Will Survive”. Solo, A capella, ensure Mrs Cameron (my stage name for Sammy) is nearby in case change mind and want to do it accompanied by karaoke track loaded on to MP3 and docking unit.  I’m hip, me

11.15 Answer a question or two, respond to one or two with comedy Jamaican accent, mon.  Bound to get a laugh, especially if there are a few colonials in the crowd.

11.30  Check I haven’t gone bright purple as I do when rattled or lying or rattled, lying.  Try and deflect if I do – pretend I am a Geordie holidaymaker or something – why aye’ll have a bagga chips.  Mon.  That’s right, isn’t it?

11.45  Pretend chair is a wheelchair and have everyone laughing at my comic interpretations about how all those in wheelchairs can walk perfectly well, they’re just putting it on.  My Lazarus act, I call it.  I plan to put it to a wider audience at the opening of the Paralympics.  Successfully deflect from asking how many times I’ve seen Sideshow Bob nude

12.00  Chas and Bex to come in and sing “I Got You Babe” to each other, professing their love and making people think we don’t go in for fourway bondage.  Remember to sing it under my breath only and not put on those authentic slacks previously owned by Sonny Bono that I bought off eBay.  Must remember to tell B to not bring the Cher wig.  We are in this together.

After lunch

I’ll have had a grog or two so I’ll just do a few accents, lighten the atmosphere.  Likelies – Australian, Spanish (qué?), French shoulder shrugging, Eastern European, grubby northern accents from that high up county, what is it, Scott Land?  Save the German accent for when I meet Angela next – I haven’t borrowed the uniform from Aiden Burley yet.

Song list for the afternoon

Would I Lie To You? – Charles and Eddie

Smooth Criminal – Michael Jackson

Don’t Stop Me Now – Queen

The Last Waltz – Engelbert Humperdinck

Hang on, who put the last one in?  Doesn’t matter, they all love me and if they don’t, I’ll just make fun of their accents and their paper clothes and their health problems and that they’re poor… and

Goodnight Britain, there’s no more time!  I’ve got a supper appointment!

Related Contingencies

Those of you unaware what a related contingency is, stay with me.  This isn’t a sports/betting matter but you’ll see why it comes up.

England to win 1-0 – 9/1

Rooney to score the first goal – 9/1

Ignore the prices, basically if either lands, you return ten for your one.  However, what if you wanted to bet on England to win 1-0 with Rooney the scorer?  Well, you just multiply out the 10 by the ten and get…

Stop there.  At this point you have related contingencies.  For England to win 1-0, there is a factor that only one team will score, for example.  Rooney’s odds will include the impact of anyone on the pitch, including the opposition, being able to score.

The opposition can’t score if they’re “nil”.  You have to discount them in your two-event selection.  That’s a reduction on the grounds that the one event has a clear impact on the other.  That is what is termed, in betting parlance, as a related contingency.

Now, here’s seven factors.

a) no parent in work
b) poor quality housing,
c) no parent with qualifications,
d) mother with mental health problems
e) one parent with longstanding disability/illness
f) family has low income,
g) Family cannot afford some food/clothing items

D and E have huge scope for related contingency.  You can tie A, F and G together as a related contingency.  Given the disparity in UK society, there’s clear scope to tie all five together in a cycle of self-perpetuation that government seeks to address by making worse, not better.  Having not yet mentioned B and C, even then you can see the clear crossover in them and the five factors already listed that can be attributed on many occasions to the mistreatment of the sick, the disabled and the poor.

“The sick, the disabled and the poor” is of course dehumanising those three swathes of humanity into an amorphous one-word blob, language used to marginalise, depersonalise and ultimately, demonise.  However, in terms of efficiency, “The sick, the disabled and the poor” should be noted that society will use three words when that set of terms will frequently be one person.

Another related contingency.

Why this seven terms?  Well, if you have five, you’re one of Cameron’s “neighbours from hell”.  Yes, he said “the media” will say that but since the government is very publicly telling the media what to say, from the plinth in Downing Street to the clear suppression of news items on the NHS or on WorkFare slavery by the BBC, media and government are now one and the same.

Another related contingency.

Cameron’s edict is that the country is in the thrall of these offensively sick, disabled paupers.  Those who are too ill to work are apparently the criminal masterminds of the UK?  No, clearly not.  Cameron doesn’t believe that but this government has realised there is a massive lobby of disadvantaged people in this country and the sterling work of certain high-profile campaigners is waking this sleeping giant.  The physical confines of the home, the historical “cupboard under the stairs” has been reduced by the virtual world.  Conservatism now approaches fascism as it seeks where possible to limit elements such as social networks.  Liberty is fine as long as you don’t practise it.

I’d be worried were I government.  The voice of disadvantaged people who previously couldn’t be heard is now front, centre and asking questions.  It isn’t beholden to party politics, it isn’t going to go away and if you try to move it invariably the horror story will be revisited in a press that despite being tame, can’t avoid a groundswell of 12 million disabled people asking questions about one of their own.

It isn’t a fight they can win because they can’t fight dirty.  The blog posts in response to Cameron’s dirty bomb already show that.  And they’ll happen every time he tries to peddle his abominable agenda.

Because that’s a related contingency.

A Good Friend Of Mine

I have had this friend essentially all my life.  We go back a long way, I’m a bit younger.  We both have Welsh roots.  Our paths have crossed in a variety of ways over the years but we’ve never for example worked together.

In my early years, my friend was always there for me, even on occasions when I wasn’t aware of the fact.  As I grew older, went through school, ‘O’ levels, ‘A’ levels, moved away for my degree, I did as every teenager did – became more independent, more self-absorbed and took things for granted.  My friend didn’t mind.  Still there in the wings, Mum and Dad and my friend got together frequently as my friend was eminently suited to bridging the generation gap.

I started off in work and visited my friend more frequently.  I became more reliant on my friend, suffering a loss of confidence and culture shock that my friend guided me through, supported me and was ultimately responsible for my improvement.  I am aware of that reliance, of the support I was given and of the unstinting loyalty of my friend throughout that period.

In the last decade, my friend and I have spent a lot of time together.  I have two children and both have been introduced to my friend, blissfully unaware of how much they actually owe my friend.  I hope that one day they get to know my friend, not in the way I did, but in a way that although my friend is there, my friend is a friend to them as well and that they need a friend like that from cradle to grave, free at point of contact and according to need.

My friend is the NHS and I would be lying if I were to say that I am not in tears once again at the thought of what my friend, my NHS, has done for me and mine, older, younger, in need or not.

My friend, my NHS now needs our support and help.  Under attack from the self-interest and greed of millionaires who think we should have different friends and we should pay them for the introduction and privilege, the knives are out to see off my friend, my NHS.

We can’t let that happen.  Everyone needs that friend, even when they don’t.

DWP, I Don’t Think You Have The Right

There was a partial victory when out of the government’s three slavery programmes, one had its policy rewritten one Friday so that it would drop mentions of how it skirted around Minimum Wage Legislation.  That wasn’t enough, though, and it was dropped within a couple of days.

The 16-24 year olds of this country could breathe easier – their first taste of work would not be slavery at a quarter of the going rate or losing that paltry quarter if they didn’t take it.

The 25s and upwards didn’t have the same luxury and remarkably, the disabled people of this country, that massive minority of people who are less likely to be in gainful employment, who work for less on average when they do and whose promotion prospects are less likely, they got to wear not the 8-week programme that the over-25s still had and the under-24s were out of, no.  They got to wear INDEFINITE slavery for what are ironically termed “benefit” (there is no benefit in being a pauper).

Now it is one thing to get these policies overturned but let’s move into the policy for a second.  Walk a mile in the shoes of someone who may not be well enough to walk that mile.  Let’s pretend we are one such “claimant” or “customer” or whatever the DWP calls “the great unwashed” these days.

You are mandated to work, you get sent to Workhouse A.  So does the thirty-year old non-disabled person next to you.

When you go there, you have a right, an inalienable right, to reasonable adjustments in the workplace.  Reasonable adjustments mean that an employer has a duty, with precious little by way of justification to be exempt, to ensure that the Spoonie (see previous blog post) is able to work with the same opportunity as a non-disabled worker or in this case, slave sent alongside him.  Any obstacle or disadvantage that can be offset and isn’t lends itself to a claim of discrimination on the grounds of disability that could end up at a disability tribunal.  There is no ceiling to what such a tribunal could award.

Now, the issue of reasonable adjustments only apply when you are aware that a worker has a disability.  If of course a worker has a disability and chooses not to disclose it, or disclose it in a limited fashion, then that is their prerogative.  Confused?  It’s a minefield, I know.  Here’s the example’s nub, though.

The DWP’s own internal policies will work on the premise that if you disclose to the DWP, it cannot extend nor pass on that disclosure without your permission.  The Data Protection Act of 1998 prevents public bodies from hawking sensitive information about you around.  There is no tacit disclosure, it is not something the body can assume; the disclosure is yours and yours only to make and you can choose as wide or as narrow as you see fit.  You need give no justification.  In terms of “sensitive information” it doesn’t come more sensitive than disability.  Furthermore, Article 4 and Article 8 of the Human Rights Act of 1998 may also come into play.

Article 4 relates to slavery and forced labour.  In the forced labour element, you cannot be forced to work under the threat of punishment that you have not agreed to accept.  I think sanctioning someone for declining the misery of unending workfare fits that bill.  Now, let’s add Article 8.

Article 8 is the right to private and family life.  Essentially you have the right to carry on your life privately without government interference.  That can be interpreted to encompass race, religion, sexuality but above all (yes, there is an overarching obligation) disability.  Your disability is yours.  The government doesn’t have a right to intervene in it, talk about it to its neighbours or pass it on to an employer determined to work you into the ground forever for pennies.  See the crossover with Article 4?

Now, Workfare.  The non-disabled 30-year-old can be sent on a finite scheme and suffer no sanction at the end.  At the same company, the disabled person can be sent on the same scheme forever and suffer sanction should they ever choose to leave or fail to discharge their “duty”.

That’s clearly unfair – indeed, I would say that opens up the floor to the fact that by demanding more out of someone with a disability, this scenario is clearly discriminatory – but what you should ask is this:

How did Workhouse A find out the disabled candidate had a disability?  If they didn’t find out from the disabled worker, who, given the choice of servitude/slavery forever or for 8 weeks, is not going to admit the condition that doesn’t  allow parole.  It can only be from a disclosure from the referring body, the DWP.

DWP, I don’t think you have the right.  I’d like to see the rationale that circumvents the legislation above because DPA98, HRA98 and EA2010 aren’t optional.  They’d better have a good answer.

To All The Spoonies – And More So, The Non-Spoonies

I’m sitting here tonight after drinking a 330ml bottle of beer of questionable Commonwealth provenance, slightly on the sour side for my liking but it’s a Sunday night, it’s just something you do, isn’t it?

Well no, it isn’t.  You see, there are millions of us out there in this country who may or may not term themselves “spoonies” but once they read the article by Christine Miserandino (as she was then) at http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ will realise their position in the cutlery pantheon, to stretch a theme a bit.

The fluctuating condition of course goes hand in hand with the Spoon Theory.  I have Crohn’s Disease and was unaware of the spoon family of which I was a member until today, pointed there by Sue Marsh, a redoubtable other Crohner (Crohnser?  Crohno?  “Crohnie” is the sort of thing we would find mildly amusing if just for the look people have on their faces if we were to say it.  You know the look – “that’s terrible, can I laugh at that without offending?”**).  If you aren’t reading Sue’s work, by the way, then you are missing an education and illumination in an area in this country where we are severely lacking.

Anyway, the Spoon Theory is something I had managed to address after a fashion over the years but never put it in anywhere near as tangible terms.  Having a fluctuating condition is just that – Spoon Theory gives you a finite number of spoons in a day, and that number, depending on the day, can go up and down.  The unrelenting joy (oh, the sarcasm is a by-product) of a fluctuating condition is that we never really know what today’s finite number is until we get it.  It’s not enough that we have to count them out, we don’t know how many we have to count out until someone fires the gun.

I used to struggle with a cloth-cutting analogy, but it was to illustrate the progressive bargaining you made when you started to lose, well, your “daily spoons”.  You’d snip a corner, let a small task slide, you’d still maintain a full piece of cloth, only smaller.  Then you’d do it again.  And again.  Before long you’re all offcuts and little cloth, still attempting to bargain with something that refuses to bargain.  Eventually, you have a piece of cloth where the offcut is bigger than the remaining piece.  How did it get that far?  Progressive bargaining.  You were cutting when you needed a needle and thread.

See, it doesn’t quite work?  I tried a graph analogy.  The non-Spoony has a workaday rate of 100.  The Spoony doesn’t have that.  We have a best number, the number that, when the drugs do work, the sun is out and we’re suitably rested, is what we take as our top figure.  It’s never 100 and will never be again.  Let’s say it’s an 85.  That 85 isn’t the norm.  The 100 for the non-Spoony is all but a constant.  The 85 is our best effort – it won’t be there forever, enjoy it for as long as you have it, pray for longevity.

When it drops, it drops on a curve.  The curve steepens over time if untreated, an 85 may go to an 84 overnight but further down, a 50 will drop to a 45 in the same spell.  Again, unwieldy, whereas the Spoon Theory puts it far more simply – your spoon count decreases at the start of the day.

The 85 isn’t for all either – one person’s 85 peak could be 20 points higher than a different person with the same condition.  We all get a different number of spoons at the start of the day.

The question that arises in my mind is just where on the graph, how many spoons, what size cloth do we all have at the start of the day?  How different is one day from the next?  Just how fluctuating is “fluctuating”.

Well, I’m in fair remission at the minute.  I would possibly give myself that 85 – can’t eat a salad or climb Helvellyn, will fall asleep on the bus but ideally nowhere else.  I was diagnosed in 1997, had been symptomatic for up to two years before.  I all but lost the next three years trying to trim that cloth, spending spoons I didn’t have as the medical team who look after me tried to stabilise me and cure an abscess that was there from ’97 and got to see the Millennium.

The thing about being diagnosed when I was is

  1. I was nearly 30.  My own experience before and after diagnosis is that the younger you were diagnosed, the worse you had it.  I was a fully-grown adult, didn’t suffer malnutrition through compromised dietary mineral absorption, hadn’t had my intestines shortened through surgical intervention.
  2. Medicinal advances were such that if there were ever a good time to get Crohn’s, the late 90s would have been it.  Surgery was still common, but medicine was making inroads beyond the relatively ineffective sulphasalazine and steroid roundabout.

The people who have told me over the years how rough I have had it faintly annoy me.  Yes, I don’t have the infinite spoons of the non-disabled but I’ve sat in hospital wards, clinics and treatment facilities and seen “rough”.  I have my problems, I’ve gone through the gamut of Pentasa, antibiotics (including one stint of two years of Flagyl which terrified everyone I know who drinks), steroids (both ends and even the odd jab – you know what I’m talking about), immunosuppresants (Azathioprine and all its inherent liver risks) and the MABs – Infliximab occasionally for several years until I developed allergens (never let anyone tell you anaphylaxis is a hoot) and now Adalimumab.  I suffer occasional mucus, no blood, no rashes, no “eyes”, no “joints” save for that I have mild psoriasis, I don’t have vomiting and my exacerbations tend to be in or near the large bowel.  Everything worsens when the numbers drop (joints, mucus) but CRP and mouth ulcers work as a solid early warning system for me.  “Rough”?  I have “manageable” and a wonderful team behind me.  The condition is rough but I am fortunately responsive.  Save for the three-year abscess, I’ve not needed cutting and my treatment regime has always had access to newer drugs that have kept me ahead of the advances of Crohn’s – medicine keeps finding new “spoons”. My hospital admissions have been few but sufficiently disconcerting.  I am well enough tonight to not need to weigh up the pros and cons of drinking a bottle of beer from Mauritius.

All luck is relative.  I consider myself lucky in that although the body I have that doesn’t work right, it will nevertheless submit to correction and management and do so for lengthy periods.  I consider myself lucky that I have one of the foremost teams in the country managing my condition – there are professionals and within those there are exceptionals and I am lucky enough to have exceptionals.  However, in a backhanded measure of luck, I am lucky enough to know what it is to be ill.  I am in remission but the odd thing about illness is when you’re symptomatic, you can’t remember what it is to be well.  However, in relative wellness, you never, never forget that Bank Holiday in 2002 where you were rolling around the bathroom floor praying to Satan and all his little wizards to take you now because this is beyond the pain anyone should ever have to endure.

Never forget that if you’re not ill and not a professional in the field, you will struggle to understand how a Spoony can “look fine” but be far, far worse off than the person next to you.

Never forget that in the UK, the NHS, the universal weapon we have that seeks to make us well as people under the premise Aneurin Bevan gave us – free at point of contact to all and according to clinical need – is under dire threat.  Its interest by definition is to see us well.  Any paid system has a defined interest in keeping us sick enough to generate business.

Never forget that Nye Bevan considered Conservatives “lower than vermin”.  They are the architects of the decline and demise of the NHS, and the Liberal Democrats, the allies of this vermin, are the equivalent party that dismantled the universal healthcare system that to this day is the only one in the the world to have been stripped from its citizens (Malcom Fraser did it in Australia in 1981)

However, if you’re to take one thing from this article, let it be this; we are still people and we do hurt, even if that’s not your intention.  Read the Spoon Theory.  It might shed some light on it.

 **Of course you can laugh at it.  We still have a sense of humour, you know.  We have to.

It seems I’m not the only person that Chris Grayling thinks “absurd” (again, with or without superfluous adverbs)

darkestangel32

Chris Grayling has hit out at those who oppose his workfare *cough* work experience schemes as being ‘job snobs’ in The Telegraph. The biggest problem with the entire article is that Grayling has told several whoppers.

He claims that under the last government claimants would have had their JSA stopped for taking part in work experience. While he is technically correct, if a work experience placement was arranged through the jobcentre then they kept all of their benefits. As far as I am aware Grayling’s schemes are arranged via the Jobcentre/work programme, so claimants would have kept their JSA anyway.

It is also claimed that the current placements are voluntary. They’re not. The word ‘mandatory’ means you have to do it, and don’t forget that if you do not complete your placement, don’t turn up, refuse, or fail to perform adequately you can be sanctioned, that means you lose…

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