Some Passengers are Less Equal than Others

(While I normally blog from the perspective of a disabled person, I’m writing this piece in my alternate persona as an aerospace professional)

There’s a sad contrast between two aviation stories this week. On the one hand we have the Paris Air Show, with the industry slapping itself on the back as the week closes with somewhere north of $165Bn of orders (yes, that figure is billions) for over 1000 airliners, 1500 when options are included, on the other we have this story from the Daily Telegraph, with Thai Airways invoking the Montreal Convention to get out of paying the full £3600 cost of replacing a disabled passenger’s wheelchair damaged during a flight. 

A national carrier trashes a disabled passenger’s wheelchair through negligence, then weasels out of paying for it? What kind of impression of the industry do we want people to take away with them? In some ways this isn’t surprising, the EU estimates that there are between 600 and 1100 incidents of mobility equipment being damaged in transit on airlines or within airports every year, just within the EU, and that disabled people travel at a significantly lower rate than non-disabled people as a result. Yet the cost of full replacements in those incidents is likely to be significantly under £5m, a piddling sum in comparison to the $165Bn worth of business done this week at Paris, or the value of all passenger flights within the EU over the course of a year.

The Montreal Convention limits enforceable compensation of baggage damaged in transit aboard an aircraft to 1131 SDRs (Special Drawing Rights, about £1100), but even a basic individually-fitted, manually-propelled wheelchair is likely to cost more than that, and if the user’s disability requires additional customisation or a powerchair, then the likely cost of replacement will exceed the Montreal Convention compensation several times over. The EU in a report on the liability of air carriers in these cases and the supporting survey notes that disabled passengers face far greater disadvantage as the result of damaged baggage than do other passengers, with the loss of mobility equipment potentially bringing their life to a screeching halt for weeks or even months. The EU further notes that the US and Canada have worked around the Montreal Convention by making full compensation for disabled passengers a pre-condition for the right to fly in their airspace, and notes that it may have to do the same unless the situation resolves itself as a result of the EC 1107/2006 rights of Passengers with Reduced Mobility when travelling by air. However the EU survey revealed extraordinary complacency among the airlines, and to a lesser extent airports, who felt that all needs of passengers with reduced mobility in the event of damaged mobility equipment were being fully met. There doesn’t seem to be any real sign of change resulting from EC 1107/2006, with stories of passengers refused boarding, outright abused by cabin crew, or having their wheelchairs or other mobility equipment trashed in transit still crossing my twitter feed on a depressingly regular basis.

As an industry, does aviation want to be seen as a force for passenger equality, or a reactionary force that has to be dragged kicking and screaming out of the 19^th Century? The Thai Airlines story suggests that latter, while Paris suggests the industry is awash with money to the point it could solve all the issues of disabled passenger rights and lose the costs in the rounding errors. The choice is ours.

#BADD2013 When Demonisation Makes Sense

If we look at the politics surrounding disability in the UK over the past couple of months, then some of the decision-making seems disturbingly irrational, or worse, disturbingly rational. 

The Bedroom Tax stands as one of the most openly unpopular measures adopted by the Coalition, people can understand that demanding families move to smaller accommodation when that smaller accommodation simply doesn’t exist is not simply unfair but outright wrongheaded. And the unpopularity of the Bedroom Tax is not simply a theoretical consideration, the Poll Tax caused rioting in the streets and destroyed a previous Tory government. In that situation, and with growing media focus on the Bedroom Tax,  it was politically important to dress up it up in as much goodwill as possible, yet the Department of Work and Pensions went all the way to the Supreme Court, refusing only at the last hurdle of letting the case go to trial, to try and force two children with very different disabilities to share a bedroom; and while they may finally have backed away from being seen to bully disabled children over a bedroom, they did not back away from insisting that if an adult couple could not share a bedroom due to disability, then they would be considered to be under-occupying.

Equally the last few weeks have seen Iain Duncan Smith, his junior ministers, and the Tory Party Chairman Grant Shapps all laying into disabled people in the tabloids, the broadsheets and on TV with claims that ‘a million of them could work’ (IDS), that ‘they get better’ (Esther McVey, Minister Against Disabled People), and that the Work Capability Assessment has scared hundreds of thousands of scroungers away from claiming Employment and Support Allowance (Shapps). The political need to demonise disabled benefit claimants has passed, the Welfare Reform Act is law, the slashing of disability benefits is a fait accompli, there is no more ground to be gained in Parliament, but the demonization continues on. The only conclusion that can be drawn is that Tory Central Office thinks there is something to be gained for the local council by-elections happening tomorrow, and that they make that gain not by any specific political aim, but simply by demonising us.

And isn’t that an unpleasant fact to face, that as disabled people we are now so unpopular that simply attacking us may incline people to vote in a specific way.

[Photo: Computer generated image of a small child in a wheelchair under the legend 'Mr Duncan Smith says I Caused the Financial Meltdown']

(One of my two posts for #BADD2013, the other is here)

#BADD2013 Behind the Mask

It’s Blogging Against Disablism Day 2013, and that’s driving my thoughts to where we stand, and how society views us.

Ten years ago things were looking if not good then at least hopeful, society was starting to think about our position and our right to be equals, rights increasingly recognised in law. Today, things aren't even hopeful. The language of politics is turning against disabled people not just in Britain, but throughout much of the English-speaking world. Where we were shifting from ‘the disabled’ to ‘disabled people’ (or ‘persons with disabilities’ in the US), we are now increasingly portrayed as ‘skivers’, ‘layabouts’ and outright frauds. Disability hate crime is up, disability benefits have been slashed, and disabled peers have just narrowly won a battle to prevent the Coalition removing the General Equality Duty of the Equality and Human Rights Commission, its legal mandate to try and make us a more equal society. Not so very many years ago I was able to get the Minister for Disabled People to intervene on my behalf when the Department of Work and Pensions was refusing to acknowledge my disability, now we increasingly talk about ‘the Minister Against Disabled People’, while even more senior ministers, such as her boss Iain Duncan Smith, a man who once hoped to be Prime Minister, rant about how there are a million of us who could work if we really wanted to.

In the US, there are similar attempts to portray disabled people as benefit scroungers, while Congress refused to ratify the United Nations Convention on the Rights of Persons with Disabilities – that’s right, the country that prides itself on being the ‘Home of the Free’ refused to ratify a treaty enshrining disabled people’s right to equality. In Europe and elsewhere in the world it is more difficult to keep track of disability rights across the language barriers, but there are disturbing stories out of Greece of hospital staff having to raid their own supplies in order to provide back-door medical care to those cast adrift by the savage austerity cuts demanded as part of their country’s financial bail-out.

We can talk about insurers and disability denial mills, and about how their twisted seed of hate, that we were too lazy to get better, fell on fertile ground with the institutionally disablist Department of Work and Pensions, we can talk about ministers who would rather target disabled people than a more powerful lobby group such as pensioners, or, god forbid, the bankers who fund their personal offices and their party coffers, we can even whisper about the likely impact of certain religious positions amongst those who write policy, but all that may be missing the point. To deny a disability insurance claim, to see disabled people as inherently lazy, to be willing to take advantage of disabled people’s status as a minority with little political power, to view disabled people as paying a penance for past sins, and to take these vicious lies as true and label disabled people as scroungers when prompted by tabloid headlines, all of these things require that you first hold disabled people in contempt.

Have we slipped backwards, or has the mask of progress simply slipped aside, to show us the disablist contempt still lurking within society?

[Photo: Nazi pro-Eugenics poster of a disabled man being supported in a twisted position on a chair by an attendant with a hand on his shoulder. To their side a legend in German states: '60 000 RM kostet dieser Erbkranke die Volksgemeinschaft auf Lebenszeit. Volksgenosse das ist auch dein Geld. Lesen Sie Neues Volk, die Monatshefte des Rassenpolitischen Amtes der NSDAP.' Which translates as 'This hereditarily disabled man will cost the community 60,000 Reichsmarks in his lifetime. Citizens, this is your money. Read 'New Race' , the monthly of the Racial Policy Office of the NSDAP.']

(One of my two posts for #BADD2013, the other is here)

DPAC, A Step Too Far?

DPAC (Disabled People Against the Cuts) and Black Triangle have issued a joint statement on the Work Capability Assessment, which can be read here, that's wouldn't normally be a problem, in fact anything which highlights the nightmare which is the WCA is generally okay by me; unfortunately the statement doesn't limit itself to talking about the WCA. The first two paragraphs state:

"We do not believe that any individual or group who claims to represent the disabled people’s protest movement should engage with DWP/Atos/Capita without insisting upon an end to the Work Capability Assessment (WCA) with immediate effect as a prerequisite to any discussion.

 We regard any such engagement with DWP/Atos /Capita without this insistence on the above as a prerequisite to be nothing less than collusion in policies and systems that have been irrefutably shown to be harmful and, in many cases, lethal to the sick and/or disabled person being ‘assessed’."

I’d be lying if I said I found this statement to be anything other than deeply problematical.

Let’s clarify what I agree with first:
DWP is an institutionally disablist organisation currently dedicated to demonising disabled people in order to legitimise deep cuts and IDS’s ‘tough love’ strategy
ATOS is not a suitable organisation to execute the WCA or PIP testing
Evidence is mounting (interpreters contract), that Capita will be just as bad, possibly worse
Supposed DPOs engaging in secret negotiations with government or contractors forfeit any right to trust.
Disability charities are deeply compromised by their dependence on government contracts.
The Social Model should drive all our aims.
The BioPsychoSocial Model is a bought and paid for perversion that demonises disabled people for the profit of the insurance industry.

But here’s the problem, we are dealing with a fait accompli; ESA and the WCA are operational, the Work Programme is operational, it is overwhelmingly unlikely we will be able to force a stop to the implementation of PIP, or to Universal Credit. These are the realities we must address, these are the realities within which we must strive to protect disabled people, and we must do whatever it takes in order to get those protections in place as soon as possible. Not even an election and a Labour government will change this reality because Labour policy on ESA is no different, which makes it unlikely they will flinch from PIP either.

In considering how we change this, it’s useful to consider the widespread government policy of not negotiating with terrorists as an analogy (with DWP and ATOS taking the part of the terrorist). The policy says no negotiation will happen in response to threats or terrorist acts, but it is tacitly recognised that a long term solution generally depends on negotiation with the terrorists, no matter how unpalatable that may be. It brought the Provisional IRA to the table and eventually into conventional politics, it appears to be doing the same for ETA and others. A policy that works is one we cannot ignore. Yet from the opposite side another analogy also speaks to the situation: if you would sup with the devil, use a long spoon.

We have seen mounting evidence of ATOS lies in tender document claims of engagement with organisations such as DPAC itself, they demonstrably cannot be expected to behave as a trusted party in any negotiations, similar concerns may apply to Capita, and the DWP. However this in itself does not mean that they cannot be engaged with, it simply means people engaging with them need to systematically record and publish those contacts in order to deny ATOS, Capita or DWP any opportunity to misrepresent what went on.

Let’s consider a hypothetical situation. If we could engage with ATOS sufficiently to force them to shift to an open complaints/quality system (which I think is one of their weaknesses), if we could get DPO representatives into that system as independent auditors, then would we be justified in refusing to do that in favour of hoping for the big win of killing the WCA at some unforeseen point down the road? Should we insist on a big win, when we might have a far better chance of a series of smaller wins taking us slowly but surely towards our ultimate goal?

Or let’s consider a very real possibility, we already have condemnation of the WCA from the GPs, that creates the opportunity for us to ally ourselves with them and use that link to gradually manipulate the GMC itself – if you want to kill the WCA, what better way to do it than to persuade the GMC to declare it as incompatible with a doctor’s professional duties? But to do that we have to acknowledge that the GMC, as a part of the establishment, will never accept a negotiation strategy that imposes preconditions on their participation, while talk of collusion will simply alienate them. The strategy will only work with a policy of engagement.

We didn’t get all the way from being locked in the attic to the Equality Act in one single move, there were a whole series of steps involved in getting us there. In the past couple of years we have seen pretty much all of the progress we have made in the past 30 years rolled back on a tide of media manipulation and disability hatred, we’re in this for the long haul, it is going to take years to regain everything we have lost and anyone who refuses to acknowledge that reality needs to stop and take a long, hard look at what our situation actually is.

And one of the realities is that it is deeply unlikely we can overturn ESA, or WCA, or PIP, or the disability provisions of the Work Programme, in one fell swoop. However it is far more likely that we can incrementally chip away at the overwhelming negativity of these programmes, and as soon as we achieve one concession, we just start agitating for the next.

Ultimately we have a choice, is it better to aim for one big win, lots of little wins, or both? DPAC and Black Triangle can dedicate themselves to the big win, but does that necessarily mean another DPO aiming for the little wins is working against us? As long as that DPO is open about its engagement and does not allow that engagement to be misconstrued, then can’t the two strategies be complementary?

The statement talks aggressively about other DPOs engaging in collusion. If it works, will we still call it collusion? If the answer is no, then we shouldn’t be calling it collusion now.

(I initially posted this as a reply to the statement on the DPAC site on Tuesday 30th, but 24 hours later it is still stuck in moderation, while other messages, and replies to them, have gone through).

Vote Early, Vote Often, Vote Lisy-Babe!

She’s cringing over the idea, but a bunch of us have decided that Lisa Egan, aka Lisy-Babe, aka the driving force behind Where’s The Benefit, should really be on this year’s Independent Pink List as one of the 101 most influential LGBT people in Britain.

Lisa is one of us, a wheelie, a spoony, someone whose disabilities brought her career as a stand-up comic to a grinding halt. Not one to let IDS, Lord Fraud and the rest of the bloodsuckers roosting in DWP Towers brand her, or us, as layabouts and scroungers, Lisa has been a major force in campaigning against the cuts in disability benefits and against the demonization of disabled people by the Tory press. Whether it is writing articles for WTB, or pushing herself to her limits to stand up for disabled people at demos and marches, I know that Lisa puts my efforts to shame, and I think that makes a real case for her to be on that list.

If, like me, you think a tireless disability rights activist sounds like the kind of person you want to see taking a place on the Pink List, then you can nominate Lisa here and you need to do it before nominations close on Sunday!

There's a longer piece on the many reasons you should vote for Lisa over at Diary of a Goldfish but all you need to remember is: Vote Early, Vote Often, Vote Lisa Egan!

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.