Slightly Reassured, but...

After last week's bombshell over my painkiller prescription, I arranged an appointment with my GP for this morning. That turned out to be with the junior doctor in the practice, the one who recommended a month ago I actually increase my dosage, not cut it entirely.

Fortunately I got some sense out of her, though I'm still not entirely happy with what's going on. Apparently one of the higher-level agencies involved with prescribing has done some data-mining and decided there is too much Butrans being prescribed in Medway (it doesn't seem to have occurred to anyone this might have something to do with Medway being a former industrial centre, which is likely to have a higher than average concentration of people with ongoing chronic pain as a result of industrial injuries) , but rather than calling patients in for an individual review, my GP just decided to have a blanket change of prescriptions.

The junior GP did admit that some people will need to remain on Butrans after the process (and implied that GPs will need to individually defend any such decisions), but in the meantime we're being asked to jump through hoops not for individual medical reasons, but for some statistical anomaly. Given a doctor willing to work with me, I've actually managed to turn this to my advantage, we've agreed to try switching Butrans for Gabapentin, which is a pain-control drug I've wanted to try for a while. But equally I've had friends experience some quite frightening side-effects on gabapentin, so it's not a move to be made lightly and I may end up in a month's time back in the doctor's office, arguing that I'm one of the patients who do need to remain on Butrans. Sigh.

As an additional bonus, in flicking through my notes the junior GP noticed that there had been no follow-up from the nerve conduction testing my orthopaedic consultant arranged last year and chased it up on the spot - only to find no one answering the phone <rolls eyes>, I've left that one in her hands to see if she can get a response as to what they found - this was the test that ended with the consultant turning to me and saying 'Well, something's clearly not right', which isn't the most precise diagnosis I've ever had, nor particularly reassuring.

The NHS, can't live without it, can't live with it!

Frankly Scared

When I went to bed last night I was happy. I was still in a lot of pain from my trip to the Paralympics the day before, I'd decided it really is time I look at the wheelchair option, and that I needed to talk to my GP about it, but these are the everyday realities of disability, they didn't change the fact that I was happy.

This morning I was woken by a phone-call, and now, frankly, I'm scared. The call was from my GP, in relation to the repeat prescription request I put in yesterday for my painkiller, Butrans (aka Buprenophine), and what she told me staggered me, she has been told to stop prescribing it. And although she was reluctant to go into the reasons, it appears they are solely financial.

In fact I had my annual medication review barely a fortnight ago with one of her colleagues, and her recommendation was that given the amount of pain I was reporting, I should actually increase the dosage. I declined the offer, I'd like to be able to increase the dosage, but I've tried that before and the side-effects don't make it worthwhile. But now, without any medical assessment of what it will do to me, I'm told that my prescription is going to be stopped. Worse, the drug suggested as a substitute doesn't work in remotely the same fashion and I know from past experience that it has side-effects bad enough I preferred to take nothing whatsoever.

Pain destroyed my working career, management weren't willing to deal with someone who ended up curled up in pain on the office floor most days. If I'm to have any hope of returning to work, I absolutely need to have effective pain control. Butrans is the only drug I've ever found that gives me that.

Technically Butrans is an opiate that's approximately 40 times the strength of Morphine (some literature suggests twice that), which means that my 5 microgramme/hour patch is delivering an equivalent of about 200 microgrammes of morphine/hour. The equivalent drugs are all similar opiates, all, like Butrans, on the controlled drug list, and the 5mcg/hour patch I use is the lowest strength available. The patch formulation is also both a more effective delivery mechanism, I'd need a far larger dosage for equivalent effect if taking it intermittently by mouth, and safer as it cannot deliver a higher dosage over a shorter time. Amitriptyline, the drug offered as a substitute, works in an entirely different manner (opiates work by bonding to opiate receptors, amitriptyline is an anti-depressant that has incidental pain control effects because it interferes with serotonin metabolism), I've used it before and it is completely ineffective on me as a pain control mechanism, while having overwhelming side-effects that left me barely able to function intellectually.

The single most effective step in pain control is when you take control of your pain rather than your pain controlling you. When I first went onto Butrans about four years ago it was a revelation, I had no idea that it was possible for me to live in so little pain. The amounts of pain I was experiencing were still disabling, but at least my first reaction on waking wasn't to yell out in pain anymore. Now the proposal is to take that away from me, for financial reasons, not medical, and frankly, I'm scared.

Not in My Name – Has the IPC Lost the Paralympics Plot?

As the 2012 Paralympics opens, disabled people are asking questions that go beyond the athletes and the competition; and those questions are directed at the International Paralympics Committee and its unholy partnership with AtoS. AtoS is the French multinational whose AtoS Healthcare subsidiary is charged by the UK government with carrying out the Work Capability Assessment to decide if disabled people are eligible for Employment Support Allowance, and which will soon also be carrying out the testing to determine if disabled people are eligible for PIP, the replacement for Disability Living Allowance, the benefit that recognises the extra costs imposed simply by living as a disabled person, whether you are in work or not. The reputation of AtoS on WCA testing is little short of appalling, around 40% of people refused benefit appeal, around 40% win their appeal, far more with appropriate support; so one in every six disabled people AtoS refuse benefit to successfully wins at appeal. Yet that appeal process can take up to a year, putting AtoS’s victims under near unbearable stress, and many disabilities are markedly worsened by stress. It is estimated that 32 disabled people a week are dying after having been declared fit for work by AtoS.

Nor it is solely disabled people who are paying the price for a failure rate that would be considered catastrophic in any other industry, fixing AtoS cock-ups costs the UK Taxpayer £50m/year over and above the more than £100m/year AtoS are paid for their ‘performance’. Given the expansion of AtoS responsibility to include PIP and as the DLA to PIP transition is defined by around one in five current DLA recipients (i.e. c500,000 people out of 2.5m) losing their eligibility for the benefit, the situation is likely only to worsen.

Unfortunately the failures of AtoS go far beyond the simple execution of the WCA. Staff attitudes have repeatedly and all but systematically proved wanting, with disabled people subjected to disablist slurs, homophobic rants, attempts to browbeat them out of giving vital information and just about every failure of a customer facing organisation you can imagine; completed assessment reports have repeatedly been found to contain accounts of tests that never took place and other outright falsehoods, to the point that the BMA found it necessary to issue a reminder to their doctors that simple honesty is a professional requirement. Even simply making eye contact with their victims is beyond many AtoS medical professionals. Yet AtoS executives persist in denying that there is any problem with their performance or that there are targets for denying claims implicit in their disciplinary practices.

On the physical level, AtoS have consistently refused to meet even the most basic of disability accessibility requirements, with many centres failing to feature disabled parking spaces or to be wheelchair accessible. Nor is this simply a problem with older buildings, AtoS have actually opened new centres which fail to meet the most basic accessibility needs. When challenged on this, AtoS claim their buildings meet legal accessibility standards, which more closely reflects the weakness of the Equality Act, which leaves enforcement to disabled people finding the physical, mental and financial resources to sue a multinational, rather than any willingness on the part of AtoS to do any more than the bare minimum. Nor is accessibility AtoS’s only resort to the legal defence, as disabled people started to organise and document their failures via social media, AtoS lawyers forced the shutting down of several disability forums, at least one of them solely because a user had posted a link to an article on another site which AtoS claimed breached their trademark.

So that’s AtoS, and their attitudes to disability are clear enough, but what does that have to do with the Paralympics? It started with computers, AtoS are primarily a computer company (disabled people would say it shows) and have the Olympic and Paralympic IT contracts. And, having considerable negative publicity to overcome, they decided to build on that linkage to become an official sponsor of both Olympics and Paralympics. And then something strange happened, the International Paralympic Committee and its Chairman, Sir Phillip Craven, decided that this disability hating company was not the worst possible partner for them, but instead the ideal partner for the IPC. The IPC’s Strategic Plan dedicates the IPC to “Change perceptions about people with a disability and existing stereotypes,” the opposite attitude to disability to that perpetuated by AtoS, yet it seems that when money talks, morality walks.

Nor did it stop there, the IPC’s reputation descending into French farce as it sank ever deeper into bed with AtoS. Not content with making them a ‘Worldwide Partner’, in August 2011 it took the unprecedented step of co-opting the former AtoS CEO, Bernard Bourigeaud, onto its governing board, despite the fact that Bourigeaud has no links with disability sport other than AtoS’s sponsorship of the IPC.

Faced with sustained criticism from disabled peoples’ organisations for its ever deepening ménage a trois with AtoS and Bourigeaud, the IPC reacted defensively, claiming AtoS shouldn’t suffer for the actions of its subsidiary and suggesting that in abusing disabled people AtoS were simply ‘doing their duty’. The ‘they were only following orders’ defence did little to impress disabled people.

                                                                                               

And then it got stranger still, with Sir Phillip Craven, head of the IPC, going out of his way to defend AtoS, stating : "I am very happy with our relationship" and that AtoS were "very much a part of the International Paralympic Committee" while the Communications Director of the IPC, Craig Spence, dismissed the overwhelming opposition of British disabled people as ‘a small minority’ and said that people should take up their differences with the Department of Work And Pensions, apparently having forgotten (or desperately trying to ignore) that people and organisations are judged by the standards and behaviour of those they choose to associate themselves with – ‘You can tell a gentleman by the quality of his friends’.

The British Paralympic Association, effectively the local IPC subsidiary, tried to run for cover, issuing a confused statement that simultaneously claimed that it wished to “inspire a better world for disabled people” and that it did not want to “comment on wider, non-sport related disability issues”.

To compound everything else, a handful of days before the opening of the Games Sir Phillip Craven astonishingly demanded that the term ‘disabled’ should not be used in relationship to the Paralympics, claiming it was like saying disabled people were ‘broken’, yet, as Craven should well know, the overwhelming view of disability subscribed to by the British disability movement is the Social Model of Disability, which specifically defines our disability as the discrimination we face as the result of society’s refusal to adapt to our needs. Or to put it more simply: deny my disability, deny me.

There’s something very wrong when the International Paralympic Committee allows the core values of the Paralympics to be prostituted out in the hope of allowing a company with the literal blood of disabled people on its hands to wash the evidence away behind the cover of the Paralympic flag. At every step the IPC and its senior officials have revealed themselves to be out of step with disabled people to a degree that beggars belief, yet simultaneously willing to lie back and think of England whenever a sponsor waves a large wadge of cash under their nose.

Perhaps it is time for a change of regime, and for the IPC to return to its roots as an organisation that actually cared about the rights of disabled people.

Living in Fear of Being Labelled Inspiring

Now don’t get me wrong, I’m looking forward to the Paralympics, I’ve even made holiday plans around them, but something inside me cringes every time that I see a Paralympics trailer on TV.

There are two main culprits, Channel 4, the Paralympics broadcaster, for this little number “Meet the Superhumans,” and Sainsburys with “Here’s to extraordinary”. 

A quick look at the #Paralympics hashtag on Twitter shows that they are drawing a positive response:

“Love the Sainsburys paralympic games ad!”

“the paralympics advert is amazing #superhumans #paralympics”

“Anyone else get tears in their eyes watching the #sainsburies ad for the #paralympics”

“The C4 #Paralympics advert is class, can't wait for it to kick off. #channel4”

So why the cringing you may ask? Aren’t these ads saying something positive about disabled people? Aren’t they spreading the word that we can do everything that non-disabled people can do?

Well sort of.

There are actually two interrelated problems. The first is that true equality doesn’t demand we be seen as ‘superhuman’ or ‘extraordinary’, quite the reverse; it demands that our disabilities be no more notable than, say, our hair colour. I don’t personally believe there is anything uniquely inspiring about Paralympians, they are elite athletes, just as the Olympians are. The fact they are going through life with disabilities doesn’t say that they are somehow more worthy than an Olympian, or than any other person, disabled or non-disabled. There’s nothing special about being disabled, we get up, we do our stuff, we go to bed, just like any other person. I might need crutches to walk any distance, but there’s nothing remarkable about that, I pick them up just like I put on my shoes and pick up my keys, and occasionally I find myself standing outside the front door, thinking “I know I’ve forgotten something….”

And so every time I see a disabled person being labelled ‘inspiring’ I cringe, because that person isn’t being seen as normal, or even necessarily as a person, they’ve been reduced to a symbol, a Tiny Tim-like emblem that says non-disabled folk are okay to feel good about themselves for thinking we’re something special.

And then there’s the second problem, the one from the darker underbelly of our attitude towards disabled people. The one articulated by people like Cristina Odone in this Daily Telegraph article  which demands “Aren't the Paralympics proof that even the most physically challenged can achieve awesome feats?” while castigating us for protesting against the Work Capability Tests conducted by Paralympics sponsors Atos, which have included such recent triumphs as finding a sectioned, catatonic man fit for work, and having 32 disabled people a week dying after being told they are fit for work. You can read about my own experiences with Atos here and here. That ‘if they can do it then every disabled person can’ attitude sponsored by Odone’s article and others like it is incredibly pernicious, we see it in the rampant claims that there is massive disability benefit fraud (the actual rates are 0.5% and 0.3%, the lowest of any benefit except the pension), and the outright and open jealousy that is displayed towards disabled people who are recipients of the Motability Scheme and the Blue Badge Scheme.

Worse, we see it in the soaring rates of disability hate crime, with most disabled people now reporting recent incidents of harassment, many if not most targeting us as supposed ‘scroungers’. As noted in this Guardian article recorded hate crime rates have doubled since 2008, and the government believes that the real rate may be 30 times higher, at 65,000 incidents a year, nearly 180 every day, with charities putting the rate as much as 50% higher than that. Or to put a more immediate figure onto it, during the 12 days of the Paralympics, the government estimates that almost 2140 British disabled people will be abused for no reason other than their disability. My own experiences back those figures, with my personal count of incidents now into double figures, most verbal abuse, but including one physical assault and one attempt to frame me for benefit fraud.

And so, no matter how I much I am looking forward to watching the Paralympics, that anticipation is tinged with fear, because there are many, many people out there who will watch the Paralympics and say that ‘If they can do that, then any disabled person who claims they are too sick to work is clearly a scrounger,” and a distinct percentage of those people will then take it on themselves to ‘chastise’ the next ‘scrounger’ unfortunate enough to cross their path. There’s something profoundly sick in the likelihood of the Paralympics being used as a justification for disability hate crime, but recent history shows that it is a reality that disabled people will have to live with.

The Most Accessible Olympics Ever

Lest We Forget (The BBC Clearly Have)

The BBC's coverage of disabled people over the last couple of years has been very hit and miss, from highs like last week's Panorama investigation of ATOS and the WCA, to lows like Panorama implying we're all on the fiddle and swanning around in yachts and Jags. Mostly it's been bad, with Auntie Beeb foregoing investigative reporting in favour of whatever twisted press release the DWP has put out most recently. And the less said about John Humphrys' propaganda piece for the Tories, or the odious Saints and Scroungers, the better.

When it was announced that the BBC had successfully bid to broadcast the Olympics, but had chosen not to cover the Paralympics, it seemed like more of the same. But I have to admit, their Olympic coverage has been generally superb. Tonight the BBC particularly impressed me, in the run-up to Usain Bolt's defence of his 200m title they chose to focus on one of the black-spots of Olympic history, the persecution of American 200m sprinters Tommie Smith (Gold) and John Carlos (Bronze) for giving Black Power salutes during the medal ceremony at the 1968 Olympics in Mexico City, and of Australian medalist Peter Norman (Silver) for supporting them by wearing an "Olympic Project for Human Rights" badge. Smith and Carlos were sent home from the Games, while Norman was reprimanded, excluded from the team for the 1972 Games, despite having set a national record that still stands, and even excluded from being a guest at the 2000 Sydney Games. Not exactly the shining example of the Olympic Spirit we might have hoped for.

After that piece of superb coverage I was even more delighted when they segued into another documentary piece, this one looking at the 1936 Berlin Games, and the horror of Eugenics. And that was when the BBC blew it. Less than three weeks away from the Paralympics, they listed the targets of the Holocaust as "Roma, Trade Unionists, Homosexuals and Jews". In a piece focussed on Eugenics under Hitler, with the Paralympics days away, they forgot to include Disabled People. It's difficult to describe what a kick in the teeth that was. Germany's own disabled people, followed soon enough by disabled people in occupied territories like Poland, were systematically slaughtered in the Aktion T4 programme, and it was the techniques applied against disabled victims that subsequently were targeted against those people the BBC did remember to list. Almost inevitably it is disabled people, the first victims, who are the forgotten victims of the Holocaust, just as the discrimination we face on the streets of contemporary Britain is overlooked or whitewashed away. In the run up to the Paralympics is it really too much to hope that the BBC might do better?

"Then they came for the sick, the so-called incurables,
And I remained silent because I was not disabled"
Pastor Martin Niemoeller (early version)

Disability Protest Art

A set of protest images I roughed out while away over Christmas.

It's a measure of how the year's progressing that it's taken me until today to get them transferred over to my desktop for final rendering. But the news that IDS wants to kick another half-million disabled people off the disability benefits that allow them to participate in society as equals makes them all too appropriate - not so much 'Big Society' as 'Big Disablist Society'.

If anyone has any ideas for a way we can use these, or even just a comment on the art, feel free to leave a comment.

(For those who are interested, the images are put together using DAZ Studio 4 and standard DAZ/Poser figures).