Tuesday, 30 July 2013

Distinctly Divisive

Now an article about the cuts by a respected disability academic would normally be a good thing, but in 'Distinctly Disabled' Mike Oliver delivers a message insidiously divisive enough to have been written by Esther McVey's Special Adviser (and I say that having spent a good few hours challenging similarly divisive messages coming out of McVey's 'Disability Confident' fiasco just a few days ago). There's really no way to get into this without getting into disability theory, so apologies in advance.

I'd advise reading the article to understand the full scope of Oliver's article, but it can be roughly summarized with two quotes:

"the link between illness and disability should be severed for the purpose of planning and delivering services"


"while non-disabled people who are ill get better, for disabled people, while we may recover from our illness, we will never recover from our disabilities"

And a conclusion:

"In these hazardous times, we need to be very careful not just with what we think or do but equally importantly, what we say about ourselves."

In essence, Oliver wants us to reject the idea of 'sickness and disability' and concentrate on disability alone, it is just a pity that that isn't a distinction the reality of disability and impairment recognises.

Ultimately this comes down to interpretations of the Social Model of Disability, which rejects the Medical Model concept of our being broken by our disabilities and needing to be fixed by godlike doctors descending from the Ivory Tower of medical science and instead holds that Disability is the discrimination we experience because of the refusal of society to put in place adaptions to our impairments. It's important to understand that this doesn't just mean things like making sure buildings are wheelchair accessible, but also challenging and changing the perniciously damaging attitudes towards disability that allow people to say things like 'I'd rather be dead than in a wheelchair,' and not realise for an instant that they've said anything wrong.

We debated these points long and hard on the old BBC Ouch bulletin board, because many disabled people, often with relatively straightforward mobility impairments, get hung up on the ramps thing and think that's all the Social Model relates to. But by chance Ouch was a hotbed of Bendies (people with EDS and HMS) and Spoonies (people with ME, CFS, CRPS, Crohns, Lupus and so on), people whose impairments are inherently messier, without such simplistic dividing lines between sickness and impairment.

Taking myself as an example, my Hypermobility Syndrome (a genetic syndrome affecting connective tissue) results in a clear mobility impairment, I walk with crutches, but inherently fuzzier is the Chronic Pain Syndrome that comes as part and parcel of HMS. My reaction to pain is abnormal at the neurological level, neuroplastic remodelling makes pain a norm rather than a response to painful stimuli. My doctors have long since given up on any hope of curing me, my Consultant deals in 'pain management', not 'pain curing', I am, to quote a term that seems to horrify Oliver, openly considered incurable. Yet I also have an ongoing need to see doctors about these more sickness-like aspects of my disability. Unlike, say, the common conception of a wheelchair user, my impairment is inherently variable, I don't know how much pain I'm going to wake up in, I may struggle to walk 10m, or stand at all, or I may walk almost normally, and these things may change from one step to the next, or in flare-ups that spread over months. When I have a major flare-up, I may need to negotiate new painkiller dosages, or even new drugs, with my GPs, just to keep the disability I face from my impairment at a controllable level. In other words my impairment keeps me in contact with the medical profession in a way that most people would normally classify as corresponding to their idea of 'sickness'.

This concept of negative effects emerging directly from an impairment seems to be one many Social Model supporters have a problem with. They're all on board with the idea that society needs to remove obstacles to our use of the built environment, that failing to do this is a form of discrimination we classify as 'disability'. If they aren't already there then they can usually be brought around to the idea that really implementing the Social Model means changing the way society thinks about impairment, because that's a form of 'disability' too, but the idea that 'disability' might result directly from an impairment is a step too far for many, who see that as an attack on the distinction the Social Model draws between the two. Yet if I'm due to meet someone, and can't get there not because the meeting is inaccessible, but because I'm in too much pain to get out of the house, or even out of bed, then doesn't the Social Model demand that they not think any the less of me for that? If I'm like a bear with a sore head because of the amount of pain I'm in, then shouldn't they recognise that my impairment results in consequences for me that they should adapt to? This is a step which many Social Model advocates seem to have difficulty with, but if the Social Model doesn't recognise all the consequences of my impairment, then either there is something wrong with the Social Model, or with how completely they have understood it.

Oliver wants to separate 'sickness' from 'disability', but for many disabled people our impairments make such a divide meaningless. IDS and McVey don't care about it, they want ALL disability to be seen as curable; the thugs who harass me in the street don't care about it, they simply see that I am different, and the hate-sellers of the Mail and the Express have told them it is proper to hate me for that. Oliver can argue for his distinction, but it won't change the reality, all it will do is create an internal schism within the disability movement, between those of us who want to protect everyone, no matter whether they are 'disabled', 'sick', or both, and those who want an exclusivist definition of disability that has no truck with any of those messy sick people. IDS, McVey and their SpAds must have loved Oliver's article, because a leading light of the disability movement is advocating throwing a huge number of disabled people to the DWP wolves in order to lighten the sleigh and let those with more classical disabilities survive the purge.

I should point out I don't reject all of Oliver's argument, there is a valid distinction to be made between aspects of impairment that require medical intervention and aspects of impairment that don't, but if I'm facing a Work Capability Test, a PIP assessment or whatever punishment IDS dreams up next, then I need it to address all aspects of my impairment, not just the ones that Mike Oliver thinks make our political position more defensible. In fact it was precisely my former employer's response to the pain aspects of my impairment rather than the mobility aspects that mean I no longer have a career and am at the mercy of things like the WCA, and that led me to take out an Employment Tribunal case for 'disability discrimination'. Been there, done that, needed sickness to be covered.

Ultimately Oliver seems to have committed the most fundamental failure for an academic and failed to define his terms. He talks about 'sickness' and 'disability' and fails to delineate precisely what divides them, and if he had done that, then he would have realised that for many disabled people, Spoonies and Bendies prominent among them, his distinction doesn't reflect the reality of our impairments.

Saturday, 22 June 2013

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 19th 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.

Wednesday, 1 May 2013

#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)