38 Degrees – Negotiating the Avalanche

I’ve just had a very positive chat with David Babbs of 38 Degrees on the problems with how disabled people have perceived what has been happening with their voting mechanism.

David addressed the issues really openly and I’m happy to agree with him that the problems are cock-up, not conspiracy*; meanwhile he has had the opportunity to take on-board our message that, after years of demonization in the media, disabled people just won’t win popularity contests, and that therefore 38 Degrees’ vote-driven campaigning mechanism is a real problem for us.

That’s a problem 38 Degrees will have to wrestle with, everything they stand for says they should be standing up for the most marginalized and discriminated against in society, but the democratic model at the heart of everything they stand for also means that the demonized can’t access that support, because the population has been brainwashed by the media over how we should be regarded. 38 Degrees depends on its membership telling it what to vote for, the membership depend on the media to identify issues, and the media portray us as frauds and scroungers living a life of luxury.

There’s a real tension in how 38 Degrees deal with that, I understand the difficulty of working with two ideas that don’t play nicely together. Cognitive dissonance barely starts to cover it. And I think that David has offered us a way ahead on that which should hopefully hell leach away some of the anger people in the disability community are feeling towards them. But it is also a discussion 38 Degrees needs to have with itself. If they remain wedded so tightly to their democratic mechanism, then how do they ensure they don’t ignore those in the most desperate need? They also need to look at their own behaviour and decide if it is truly consistent. David admitted that opposing DLA changes should have been on their latest poll and was left off accidentally, but he doesn’t feel they need to do anything about that. I’m not so convinced and I suspect that others will feel the same.

So we’ve made progress and I hope we see more, but things aren’t entirely resolved and as disabled people we’ll be watching to see that 38 Degrees does take a hard look at how it makes sure disenfranchised minorities aren’t beyond its help. After all, no vote told Wilberforce to support the abolition of slavery, no vote told the Pankhursts to lead the Suffragette movement, and no vote should stop 38 Degrees from doing what is right.

* You can see that DLA issues have been on the past votes by scrolling done on the Future Campaigns page , but they aren’t on the current one and you can also see that our votes are falling – people simply don’t understand the depths of the attack on us, and if they don’t understand that, how can they vote for us? It really is a textbook example of disenfranchisement in action.

Disabled People, Betrayed By 38 Degrees?

You may detect a slight hardening of my language since Friday's blog, that's because I've been looking into the matter in more depth, and the more I look, the uneasier I become about attitudes within 38 Degrees towards disabled people.

Shortly after publishing Friday's blog, a friend tweeted and pointed out that disabled people had actually won the previous campaign vote, but that 38 Degrees had then shelved that vote and staged another at which the NHS won. Obviously that's a very serious allegation, the problem is that the facts seem to back it up.

If you go to 38 Degree's Campaign Suggestion forum, and order all suggestions by popularity, which this link will do, you'll find a list of the most popular campaign ideas.

Sitting at number 6 is "A campaign to stop the abolition of Disability Living Allowance - the measure of civilised society."

Sitting at number 9 is "The coalition "are considering" assessing children in their DLA shake up." But attached to that is this note:

• "We're looking into a technical problem with the suggest a campaigns system. Last night we merged this with another DLA campaign after being asked to by the people who had originally created the suggestions. This follows on from previous problems we had with merging campaigns.  Unfortunately last night there was a problem with the system and when we merged the campaigns thousands of votes were removed from the total. I'm really sorry this happened. We're looking into this and trying to sort it out."

If we assume the minimum possible value of 'thousands', i.e. 2000 votes, then that would have been sufficient to boost this to just over 4000 votes, making it at a minimum the 4th most popular campaign suggestion.

But 'that's okay' you say, 'the problem just happened last night, 38 Degrees will fix it on Monday'. Which would be fine if it was true, but I know for a fact - having seen it myself - that that message has been there for months with no action being taken, and all but a handful of the comments attached to it are 8 months or more old. Months with no action, months of wasted inactivity during which the Welfare Reform Bill has been trekking through Parliament side by side with the NHS Bill. Look at everything 38 Degrees have achieved in trying to stop the NHS Bill, look at everything 38 Degrees haven't done to stop the Welfare Reform Bill. The suspicion that disabled people, and the votes and activities of the 38 Degrees membership, have been sacrificed to concentrate on the NHS Bill is impossible to shake. In fact I can't find any sign that 38 Degrees have lifted a finger to oppose the Welfare Reform Bill or defend disabled people.

There's a word for treating disabled people as second class citizens, that word is disablism, or two words if you aren't familiar with the one, disability discrimination.

I don't want to believe that of 38 Degrees, but their own polls show opposing the disability related provisions of the Welfare Reform Bill at numbers 4 and 6 in their own members lists of suggested priorities, combine them together and they are the 2nd most popular suggestion with a minimum of 7,243 votes, within 350 votes of the most popular suggestion and nearly 1,500 votes ahead of the 3rd most popular suggestion.

Sitting down at number 18 is opposing badger culling, and yet that's currently splashed all over the 38 Degrees front page as one of their successful campaigns?! I can't help wondering if the problem is 38 Degrees HQ thinks crips aren't as cuddly as badgers.

So, opposing DLA changes has got more votes on the 38 Degrees website than any idea but fairness and equality for pensioners (and we all know the strength of the pensioners lobby), but when 38 Degrees put out 17 suggested campaigns, including issues as diverse as powerstations, tax avoidance, the Murdochs, and benefits for pensioners living abroad, disability issues don't feature at all? Forgive me, but something's not just rotten in the state of Denmark, but stinking to high heaven of disablist discrimination.

If you think I'm writing this to shine a light on 38 Degrees and shame them into treating disabled people as the equals this government is determined to ensure we aren't, then you're damned right I am.

So what's it to be, 38 Degrees? Do you really believe in democracy and equality, or is it just a sham to trick people into campaigning for your own hobbyhorses? Are you for disabled people, or against us?

Has 38 Degrees Abandoned The Hardest Hit?

The campaigning group 38 Degrees has been one of the features of the ConDem regime, challenging government policies on things as varied as the plans to sell off the forests and the NHS.

Yet there has been one glaring and continuing absence in their policies, any attempt to fight for the rights of the Hardest Hit of this recession.

Disabled people have asked them for support, we've posted on their fora, we've even received substantial voting support there from other followers, but somehow we never seem to be amongst the campaigns they propose they adopt.

38 Degrees just sent me an opportunity to vote on their latest proposed campaigning priorities:

1. Continue the campaign to stop Lansley's NHS plans
2. Run research and local campaigns to expose cuts to the NHS
3. Continue to campaign for planning laws which protect the countryside and local communities
4. Stop rip-off increases to gas and electricity bills
5. Support proposals to make gay marriage legal
6. Continue speaking up for our forests and challenge future attempts to sell them off
7. Make sure that every child from a poor family receives a free school meal
8. Continue to push for a Robin Hood Bankers Tax, a tax on banks that would give billions to tackle poverty and climate change
9. Stopping the building of new coal power stations
10. Step up the campaign to ban secret lobbying
11. Push the government to do more to tackle climate change
12. Continue to demand a real clamp down on tax dodging
13. Campaign for British pensioners living abroad to get increases to their pensions
14. Speak up in support of the British government continuing to give aid to poorer countries
15. Show support for the "Occupy London" protests outside St Paul's Cathedral
16. Campaign against government plans to scrap some employment laws
17. Reform media laws to stop media moguls, like Rupert Murdoch, ever getting so much power again

I support the vast majority of these (the powerstation issue is presented too simplistically for me to take a position on), but the Welfare Reform Bill is almost law, 700,000 disabled people who even the government acknowledges are not fit for work face losing potentially all of their benefit, 20% of DLA recipients face losing their benefit by fiat, unknown numbers of families with disabled members face being forced out their homes because of the housing benefit changes, and the horrors of WCA continue unchecked, while support cuts mean disabled people are being told by the courts that it is perfectly acceptable for a council to let them lie in their own waste. Yet not one of these is addressed in the proposed campaigns, disability is simply not mentioned at all.

I'm forced to the conclusion that 38 Degrees have abandoned us, that the horrendous assault on disabled people and the benefits and support we depend on is beneath their notice. And if that's the case, why should I support an organisation that believes what happens to disabled people isn't important?

So come on, 38 Degrees, convince me that you value disabled people and recognise that what is happening to us needs to be fought against by the entire country.

Or are disabled people simply not trendy enough?

And that's why my response to their poll reads simply: "I'm sorry, I can't continue to support an organisation that refuses to recognise the assault on disabled people and the benefits and support they depend on."

Addendum:

In the short time since writing this, I've been reliably informed that supporting disabled people actually won the last 38 Degrees poll, only for it to be shelved and a second poll taken which opted for supporting the NHS. I'd really like to see an explanation of that.

30 Pieces of Silver - The International Paralympic Committee and ATOS Origin

The following is the text of a letter I have just sent to the International Paralympic Committee (info@paralympic.org) regarding their partnership with ATOS Origin - they of the appalling record for disability assessments and cavalier attitude toward disability rights, not to mention freedom of speech. If you aren't familiar with ATOS, you can read the full and unpleasant story of my encounter with them here, and mine was a relatively positive example in comparison to many of the tales of abuse out there. I literally cannot think of a worse company for the International Paralympic Committee to partner with, yet there they are, taking their 30 pieces of silver, kicking disabled people and everything the Paralympics movement stands for in the teeth.

If you don't think this is good enough, if you think the IPC should know better than to partner with a company that promotes the perception of disabled people as scroungers, refuses to meet our most basic access needs and rolls out the lawyers when disabled people complain, then I urge you to write to the International Paralympic Committee at info@paralympic.org and copy it to your national paralympic committees (see here). Feel free to borrow from what follows, but the message will be stronger in your own words and experiences.

Dear Sir,

  As a disabled person I have no option other than to write and express my utter disgust that the International Paralympics Committee have entered into a partnership with ATOS Origin. With less than a year to go to London 2012, the worldwide disability community is increasingly focused on the United Kingdom, but it is in the United Kingdom that ATOS Origin are known to every disabled person for their disablist activities. Awarded the contract to assess disabled people for disability related benefits, ATOS Origin have left a massive trail of distress and a string of suicides behind them, as their contempt for disabled people results in assessment after assessment at which not even the ‘facts’ reported by their assessors can be taken at face value

I can perhaps best illustrate the repellent attitudes of this company towards disabled people by describing my own experiences with them, and I write as someone who passed their assessment rather than as someone who failed it, meaning I have no axe to grind for being rejected. Their first attempt at an assessment for me got no further than the door to the assessment room, they had failed to provide the reasonable adjustments to my disability needed to get me through the assessment – adjustable seating, nothing too outré – adjustments that they were required by law to provide. When questioned over this, the ATOS doctor admitted ‘We have complained about the seating before, but regional management just tell us to make do with what we have’. This clearly indicates an utter contempt for the needs of disabled people existing at higher levels of management within ATOS Origin. ATOS then proceeded to tell the Department of Work and Pensions that I had failed to attend the assessment, resulting in my benefits being frozen. I leave it to you to judge the attitudes to disabled people this less than honest report reflects. The stress this caused led to a massive flare-up in my disability that lasted for months. When I was finally able to challenge the decision DWP immediately accepted my points, they had heard them far too often before, and a second assessment was arranged.

The second assessment was a clash of wills, between an ATOS doctor who clearly wasn’t prepared to listen to yet another disabled person annoying him with facts and my own refusal to be browbeaten. I was criticised for not giving ‘yes’ or ‘no’ answers, even when neither would have been true, I was criticised for knowing the structure of the assessment, I was criticised for insisting on giving the information that indicated I automatically qualified for my benefit, even though he had failed to ask for it, even though the information to say he needed to ask for it was on the form in front of him, I was even criticised for my description of the effects of my disability, a description shown to be completely accurate just a few minutes later when the still inadequate seating left me unable to continue other than by balancing on one leg in the middle of the room, hanging desperately onto the back of the chair. I was even criticized for being unable to bend my knee so that he could test my reflexes. I have met bad doctors before, but only at ATOS have I met doctors who criticised me for my disability. Surprisingly I passed the assessment, but many, many disabled people would not have been able to override the opinions of an abusive, close-minded doctor in the way that I did. As an engineering professional I understand the legal duty of care when acting professionally, in each of my two assessments ATOS Origin aspired to a level of professional competence and care that was utterly farcical.

And yet my assessments were far more professional than many that are reported. Outright falsehoods in assessments seem positively common, while ATOS personnel have been caught in homophobic rants, abuse of their patients as scroungers and a whole range of other abuses that would seem absurd if they weren’t demonstrably true. Even if we disregard the many, many reports of outright disablist behaviour, their true attitudes towards their disabled patients (though their staff are urged by ATOS management not to think of disabled people in those terms, even as they conduct medical assessments and delve into the most intimate details of their disabilities) can be illustrated by the fact that many of their assessment centres, centres whose entire clientele will be disabled, do not have on-site disabled parking, are not wheelchair accessible and lack even such basics as accessible seating.

The statistical results of ATOS Origin assessments demonstrate that their professionalism towards disabled people is clearly questionable, in any other industry a failure rate of 1 in 8, as demonstrated by successful appeals at independent tribunals, rising to almost 1 in 4 with representation from advocacy groups, would be an utter catastrophe, never mind in an industry where each of those failures represents an individual disabled person put through intolerable stress at considerable risk to their health, but ATOS Origin continue merrily onwards, not just refusing to acknowledge that they have a problem, but actively trying to stifle debate by bringing legal actions against disabled people who dare to complain publically.

ATOS Origins have demonstrated their attitude towards disabled people in tales of abuse stretching from one end of the UK to the other. If they chose to associate themselves with the IPC, it is not to demonstrate that they care for disabled people, that they do not is demonstrated by their refusal to admit that they have a problem, but because they see the goodwill that people around the world hold for the Paralympics Movement and hope to leech away some of that for themselves, hiding their disablism by wrapping it in the Paralympic Flag. Is the IPC really willing to sell the reputation of the Paralympic Games to whitewash the abuse of disabled people? Are ATOS Origin's 30 pieces of silver really worth the betrayal of everything the International Paralympic Committee stands for?

As a disability rights activist, if the IPC choose to retain their connection with such an actively disablist firm as ATOS Origin then I will have no option than to throw my weight behind the protest campaign at London 2012 and stand in line with other disabled people saying ‘Not in our name’. Disabled people picketing the Paralympics in a stand against disablism, could any sight be more disturbing?

Yours in sadness,

David Gillon

Flattened

I've just had a forcible reminder of how disabling my back problems are, and seeing as the flying monkeys reminded me how little of disability many people understand, I thought it might be interesting to describe how it's affected me the last couple of days.

For someone with disabling levels of back pain, I actually manage fairly well most of the time, so long as I don't do more than potter around the house and spend most of my time flat. It's just the parts of life that involve getting out and doing things that I have problems with.

I woke up on Friday with a touch of back ache, roughly over my right kidney - no idea why, but these things come and these things go and I'm used to being in pain, often far more than this, so I didn't pay it a great deal of attention. This one didn't go, it was still there on Saturday morning, but by this point I was ignoring it, or at least I was until I popped out for coffee with friends - which is often enough the only time I get out of the house during the week.

We meet in town, so that means a five minute drive and a short walk to the bar where we meet. I don't use my crutches in the house - the distances are shorter than my unsupported endurance, but they aren't shorter by much so I'm absolutely dependent on them outside. Almost as soon as I walked away from the car, that niggling pain over my kidney transformed itself into a stabbing dagger of pain running from shoulders to waist, my spine locking itself so rigid that even breathing becomes interestingly different, and it was patently obvious that it was using the crutches that was causing the problem. For someone else that level of pain might be completely disabling (especially as this is what I'm feeling past the opiates!), but I'm used to it, so it's extremely unpleasant rather than absolutely catastrophic. Coffee was a welcome distraction, but the walk back to the car was more of the same and I knew that I needed to get off my feet.

Back at the house I spent a couple of hours flat on my back listening to the football, which seemed to calm things down. With things settled I thought I'd go and finish downloading some software I'd just bought. My computer seat is oddly suited to me, wide enough to sit in cross-legged, which always helps, and with the tilt lock left open I can constantly adjust the way I'm sitting. I'm still severely restricted in time upright (I've hardly been able to touch the artwork I use the computer for this year), but not as badly as in other seats. This time it didn't help, that dagger of pain down a rigid spine set in again within just a few minutes, not even reclining as far back as the chair allows made any difference, leaving me wishing I could convince someone to fit me with a particularly restrictive full-length back brace (there are very good reasons I shouldn't use one all the time, but some days it would be nice to have the option to let me do stuff even if my spine objects). So back to the couch.

I did get as far as putting the oven on, planning on pizza for dinner - anything more elaborate would have been too long on my feet, but once I was flat again waiting for it to heat up I realised I wasn't about to move for the night. 'dinner' ended up as a packet of crisps when I finally forced myself to get up and turn the oven off. Lying flat meant the pain mostly went away (though of course lying flat brings its own set of minor and not-so-minor pains), but I have a bizarrely varying reaction to severe pain. Either I all but collapse and sleep it off, or it goes, but I can't sleep. So there I was all night, laptop perched on my chest, playing Angry Birds until the dawn chorus joined them for real.

I think I finally got to sleep about 8AM, waking up groggy and disoriented at about 3PM. I was finally up and running in something like a normal state of mind by about 6PM, so went to finish downloading that software, and there's the pain again....

I did manage to cook something today, so I'm not quite living solely on crisps, but the art of cooking while perched on one leg for as short a period as possible doesn't leave much room for culinary innovation....

It's 3AM, I'm typing this with the laptop perched on my chest, and I give it about a 50:50 chance I'll see the dawn, and I've no idea how long the elevated levels of pain will last, might be gone tomorrow, might still be here 3 months from now, I've learned to live my life making up my plans as I go along, because it's simply impossible to plan around a disability as random as mine. Meet me on the street and you simply see someone with crutches, that doesn't even give you a reliable indication of what kind of disability I have, you certainly don't see all the ways that it affects my life; the complexity of disability is utterly invisible, unless you're the one living with it. And the more people we can help to understand that, the better.

Is Britain the Worst Place to Live in Europe?

The Guardian asked today if Britain is the worst place to live in Europe.

Is the UK the worst? I don't know, but it certainly isn't an ideal place if you're disabled.

A media that claims on a near daily basis that we're all frauds and scroungers (the Guardian is a near lone exception).

People who overwhelmingly believe that 'they're all at it' and simultaneously that if their relatives fall ill the state will instantly meet every need (they're in for a rude awakening).

People who openly state that we'd be better off dead, who urge us to go to Switzerland and use Dignitas, who attack anyone who tries to argue that our life is just as valuable as anyone's else.

Complete strangers who attack me in the street as a benefit fraud, without knowing whether I am working or not, revealing it as an attack on me simply for being disabled.

Politicians who proclaim that we are the 'vulnerable', demeaning us as less than adult, but that we are safe in their hands, then turn around and cut the benefits the most disabled of all of us depend on, proclaiming all the time that only the fraudsters have anything to fear.

I don't know if Britain is the worst, but it could be a hell of a lot better, and a hell of a lot more equal.

Another Train Journey From Hell

- Or the nightmare of travelling with a disability when plans fall apart.

I’m just back from a visit to my family in the North East, it was good to see them, and the journey back was okay, if exhausting; it’s just a pity I can’t say the same for the trip up.

I always travel by train, the problems my disability causes with sitting mean I can’t drive for long enough to get there (or even to get out of town!) while coach journeys are just too long to tolerate (air travel too once you add in connections). Train seats are verging on the edge of intolerable, but at least I can limit the exposure, I just have to plan on not necessarily being able to do anything for up to a week afterwards. (1)

The plan was 11:24 from Chatham  to St. Pancras, walk over to King's Cross, get the 13:00 to Darlington, then pick up the local train to Bishop Auckland where my parents would collect me at 16:20. Planned elapsed time, about 5 hours. The saying is no plan survives contact with the enemy, but precious few survive contact with reality and this one was no exception.

I was having real problems walking at all even before I got to the station, reduced to a swing-through gait that uses my shoulders and crutches rather than my legs, and just glad I was travelling light with only a small rucksack, which meant I could use both crutches as opposed to having to tie one to a larger pull-along piece of luggage. My first thought on getting down the stairs to the platform was ‘There’s an awful  lot of people here’, the second thought was ‘Oh, shit!’ rapidly followed by a check of the announcement boards, which confirmed that we were still waiting for all three of the trains that should have come through in the last hour (and the antique boards only have room for 3 entries…). I was over 20 minutes early, so I thought at least I’d get to know what the situation was before my train was due, fat chance. The best I heard was a garbled announcement on the opposite platform that there were emergency track repairs happening somewhere.

11:24 arrives, no sign of my train. Five minutes after that we get the announcement that the train now approaching is the late running 10:28, it’s only going to Dartford, but anyone wanting any of a long list of London stations should get on and follow instructions at Dartford. St Pancras isn’t mentioned, and there’s no one on the platform to ask, while the booking office is back up a long flight of steep stairs (I’ve no idea how someone with a hearing impairment was meant to cope with all these instructions delivered solely over PA). This is a problem, there are three lines out of Chatham to London, the fast line to Victoria, the slow line to London Bridge and Cannon Street, both of which need underground trips to get to King's Cross, and the very new, very fast line to St Pancras, which is right next door to King's Cross. Taking anything other than the St. Pancras line might mean I missed my connection at King's Cross, but given there had been no mention whatsoever of the St. Pancras train, and everything else was over an hour late, I decided I had to get on and risk it; otherwise I might not get out of Chatham at all.

I’d packed really light, and decided that my hard collar didn’t make the cut as I’d only worn it a couple of times in the past month, and it isn’t exactly a convenient shape to pack. Purely on impulse I’d grabbed my soft collar because there was just about room for it in my rucksack. Within a couple of minutes of sitting down I was cursing myself, it felt like I’d been stabbed in the shoulder and I really needed the hard collar, the soft one just about stopped the situation becoming intolerable, but I wasn’t a happy bunny.

We crawled to Dartford, even stopping at some stations they had claimed we wouldn’t stop at. At Dartford several hundred frustrated passengers poured out of the train to announcements telling them that trains were waiting at platforms 1 and 2 and to follow the directions of staff. Platforms 1 and 2 were over a footbridge, with another set of steep steps, and by this time steps were the last thing I wanted to deal with, I was doing well to be vertical at all. There was a sign saying a lift was available, but with trains waiting and no staff member in sight I wasn’t certain I would make it if I took the time to find someone and say I needed to use it. So I struggled over the bridge, last one of several hundred, and yelled ‘King’s Cross?’ at one of the guards, who pointed me onto the Cannon Street train and said to get off at London Bridge.

I was no sooner on than the train was off, and needless to say the train was packed, with people standing everywhere, but someone stood up to let me sit down. Unfortunately it so crowded there was no room to take off my rucksack, which just served to amplify the pain coming out of my neck and shoulders. By this time the only thing stopping me from packing it in and going home was that the trip back would be just as much of a nightmare. The trip to London Bridge was another stopping crawl through every minor station in East London, finally getting me into London Bridge at about 12:35 – umm! I think I’ve been to London Bridge precisely once before, so I’m not exactly familiar with it, but I can navigate these places given time, unfortunately that wasn’t something I had a lot of. I followed the signs for the Northern Line, glad I didn’t need to use the Jubilee Line (‘Jubilee Line is currently not running due to a person on the track’). Now the signs were clear, the concourses wide and brightly lit, and I don’t recall any steps, but what I do recall is a walk from platform to platform that took me 10 minutes when I was struggling to stand at all. Of course I just missed one train, so when I finally got on a tube it was with 10 minutes to make my connection – not gonna happen! And I was right, we were a couple of stops short of King’s Cross when 13:00 ticked around.

Once at King’s Cross it was another 10 minute trek to get to the Main Line station – even if TfL are making efforts to make a token few stations accessible to disabled people the reality seems to be that they’re turning them into airport-like concourses that are inaccessible due to the distance to be covered even if step-free access is now provided. And is it really beyond the wit of man to put distances on the direction boards? A few hundred metres may not seem significant if you aren’t disabled, but if you are then knowing the distance may give you some indication of whether you can make it to a platform or need to ask for help.

At King’s Cross, the announcement board confirmed that the 13:00 had already left, so I squeezed through the crowd to the Information Booth to ask what I should do. ‘You need to go to the booking office,’ they told me, ‘you’ll probably need to buy another ticket’. Yeah, right. So I went to the booking office and found a nice long queue, with no provisions for disabled customers that I could see. When I finally got to talk to a booking clerk it was over a wide chest-high counter. I struggled to hand my ticket over to him with crutch attached to my arm, god knows how someone in a wheelchair would have managed. ‘You’ll need to buy another ticket’ he said, too bored to listen to anything I had told him. I pushed my voice up to insistent and pointed out I had done exactly what I was told and taken the only train running and it was his responsibility to fix it, not mine. So he grudgingly turned to his monitor and started trying to confirm what I had told him. After a couple of minutes he turned around again: ‘This is a St. Pancras ticket, it’s a different company, you should have got on the St. Pancras train’. Arghh! Which part of ‘I took the only train’ was he having difficulty with? Crank in another level of insistence and repeat the story for at least the third time… After a couple more minutes fiddling with his computer he decided that he needed help and went off to talk to a colleague; by this point I was hanging onto the counter just to remain upright and any more objections were going to be answered with a demand to 1) speak to his supervisor and 2) do it somewhere I can sit down. I was at the point I was seriously considering sitting on the floor. After several minutes of peering at on-screen logs of what services had actually run with his colleague he came back, pulled out a pad and ignored me while he started scribbling on a voucher.

 “You can get on the 13:30” he said, stapling it to my ticket and handing it back without really looking at me.

By this time it was after 13:20, just physically getting to the 13:30 before it left was questionable, which I pointed out to him, I also pointed out that I absolutely needed a seat, which isn’t always guaranteed on the East Coast Line.

 “You’ve got plenty of time!” he said repeatedly, oblivious to the fact I was wearing a collar, using crutches and hanging desperately onto his counter lest I fall over. It wasn’t just questionable whether I could get to the train in time, I also needed to phone family to let them know about the change of plans, didn’t have a mobile on me, and would much rather have caught the 14:00 at that point, but he clearly wasn’t interested and I couldn’t face arguing with him any more, so I headed for the train, trying to make the best of a bad situation. I did get there before it was due to leave, barely, but the train guard took one look at me and said I had better get onto the first carriage and walk through the train to Standard Class, she at least realised I couldn’t walk that far before the train was due out.

Fortunately there were plenty of seats for once and the journey up to Darlington was fairly straightforward, apart from the bit where I missed my connection there by 10 minutes, on a service which is less than hourly, and couldn’t phone my parents to let them know. I finally made it to Bishop Auckland at just before 18:00, my father having sat patiently waiting for me in the station car park for over an hour and a half. Three trains and five hours had become six and a half hours, four trains and a tube, none of them ones I should have been on. I had a quick bowl of soup, told my parents ‘I’m sorry, but I have to go to bed now’, and was in bed (shaking!) by 19:00, sleeping through until 08:00 the next morning. The only good side to it was that I slept the effects off, rather than being completely out of it for several days.

I’ve had train journeys like this before; it’s why I never go into London if I can avoid it any more. You can plan your journey around your abilities, but if things go wrong then you can rapidly find yourself in a situation where you don’t know where you are and don’t know whether the route to get you out of it is either accessible or manageable (two different things entirely). And then you can find yourself facing staff who clearly don’t have the first idea that someone with a disability may not be able to sprint for a train, may even face difficulties just in talking to them over a counter. I have this horrible feeling that TfL, Network Rail and the Train Operating companies are going to turn the Olympics, and particularly the Paralympics, into an embarrassing farce of inaccessible transport and tens of thousands of disabled people from all around the world who simply can’t get to where they need to be, and can’t get the help they need, because we have a rail system with Victorian levels of access, and Victorian levels of disability awareness in the customer-facing staff.

(1) Necessary caveat to make it clear to DWP that suffering through a train journey doesn’t mean my disability has changed!

A Day of Infamy

(This is the piece that should have gone up yesterday, 1st of September, and prompted my move to Blogger. I deliberately haven't changed anything to reflect the delayed post as it is talking about the specific day)

LatentExistence wrote an excellent piece yesterday for Where’s The Benefit, entitled Godwin’s Law Must Die, discussing how people’s horror at Nazism actually gets in the way when 1930s Germany really is the only historical parallel for the situation you are experiencing.

It had slipped my mind what today is the anniversary of until I was reminded by someone else’s tweet, but it is an anniversary that brings that post by LatentExistence into sharp focus and reminds me of the things we must never allow ourselves to forget, whether disabled people or not.

Today is September 1^st. Although in Great Britain we usually remember the start of WWII as the 3^rd of September, based on our own declaration of war in support of Poland, it was on the 1^st that Germany executed Fall Weiss, the invasion of Poland, having used commandos the night before to manufacture an incident of ‘Polish’ provocation. Attacked from three sides - Slovakia invaded with Germany, while Russia stabbed Poland in the back on the 17^th - organised Polish resistance soon collapsed, although many Poles slipped away, coming to Britain and France to continue the fight. The end of organised resistance did not bring an end to the killing, it just provided freedom for the massacres and the men of Einsatzkommando 16 moved through the mental hospitals of Western Poland, slaughtering the disabled patients: 7,000 at Gdansk, 10,000 at Gdynia, and hundreds at Poznan in the first example of mass gassing, a process Himmler came to see in December of 1939. The organised extermination of disabled mental patients then spread back into Germany itself, clearing the hospitals of the ‘useless’ to free them for war-wounded: 1,400 in Pomerania, 1,600 in East Prussia, 8,000 of their own people in this wave, killed for the crime of being disabled.

The organised killing of disabled Germans had actually started before this, with children, or, perhaps more precisely, a single child. Part of Nazi Party ideology, a creed which in some cases literally became a religion, was a fetishizing of racial purity, the cult of the inherent superiority of the blue-eyed, blonde-haired Aryan German, destined to rule over the untermensch, eugenics taken to its ultimate conclusion. That some Germans might be less than ‘perfect’, might actually be disabled, was problematic for the Nazi Party’s racial purity zealots, and in the confrontational politics of 1930s Germany problems were simply something to actively pour your hatred onto. They took the passive concept of racial purity and developed it into the active concept of racial hygiene, planning to purge the German Volk of undesirable elements, such as people with disabilities.

Eugenics run rampant wasn’t actually unique to Germany at that time, both the US and Sweden had programmes for sterilizing those with disabilities considered inheritable or who were judged to show anti-social behaviour, but Germany turned to sterilization with all its national fervour for efficiency and in June 1933, almost as soon as the Nazis were in power, passed the Law for the Prevention of Hereditarily Diseased Offspring, which mandated sterilization for disabilities such as epilepsy and ‘social deviances’ such as alcoholism. Hereditary Health Courts (Erbgesundheitsgerichte), conducted a witchhunt through the German mental hospitals, asylums and other institutions, choosing those to be sterilized, a number estimated to have run to 360,000 Germans by 1939. Perhaps the only reason the programme did not progress to physical disabilities was that the senior Nazi Joseph Goebbels had a club foot. And all the while the Nazi propaganda machine was churning out films and posters intended to portray disabled people as a drain on the state and worthy only of euthanasia.

In 1939 Hitler asked Brandt, his personal physician, and Bouhler, head of his chancellery, to look into the case of a disabled baby, Gerhard Kretschmar, whose parents wanted him killed – the father’s letter to Hitler apparently referred to his son as ‘this monster’. In July 1939 the killing was carried out and Brandt was instructed by Hitler to proceed on the same basis in other cases, leading to the systematic classification of disabled German children by the Committee for the Scientific Treatment of Severe, Genetically Determined Illness, authorised on 18^th August 1939, with doctors and midwives required to report all births of disabled children and preparatory measures being made to extend the process to adults. With the outbreak of war the need to proceed cautiously diminished and in October 1939, Hitler issued the Euthanasia Decree, bypassing the Health Ministry in favour of Brandt and Bouhler, his own men:

Reich Leader Bouhler and Dr. Brandt are charged with the responsibility for expanding the authority of physicians, to be designated by name, to the end that patients considered incurable according to the best available human judgment of their state of health, can be granted a mercy death.

And so Aktion T4 was born, a programme that ultimately killed over 200,000 disabled Germans and started a full two years ahead of the Wannsee Conference and the decision on the extermination the Jews. But the killing had already started, and so Hitler backdated the decree to ‘legalise’ the actions that had already taken place.

The date he chose was September 1^st, 1939, a day of infamy.