Wheelchairs verus buggies. The bus wars.

In recent, and very unreported news, two conflicting cases on wheelchair access on buses have been sent together to the court of appeal. This is set to become a leading case on public transport issues, and therefore may well be a litmus test case for disability rights in our current system, and under our current ideologies.

The conflict that arises between wheelchairs and other passengers on buses is very symptomatic of the way our society currently operates on issues of equality and access.  It’s one that raises questions about the difference between concepts of ‘equality and diversity’ versus ‘anti-discriminatory practice’ and tells us which one of those is actually more useful. It tells us much about what our society considers the word ‘equality’ to mean, and contrasts that against what it really means to those from minority groups affected by it.

Wheelchair users should have access to buses. It’s a simple no-brainer, one would have thought. The wheelchair accessible bus was invented in 1947 by Walter Harris Callow. This isn’t some strange, newfangled technology. Sadly, however, it is quite new in many places to have actual access to such buses, or such access does not exist at all. Across the EU, a legal directive, known as the ‘Bus and Coach Directive‘ came into force in 2001 mandating that wheelchair users must have access to buses, and that any new buses purchased from then on must not discriminate against wheelchair users in their design. (A mere 54 years after it became possible). In the UK, the disability discrimination act of 1995 had made similar national regulations, but ones that only came into force for any new purchases from 2001 onwards. Routmasters, those ‘traditional’ London buses with several steep steps up to the entrance, remained the dominant type of bus on the London streets until 2005, when they were finally replaced by Ken Livingstone, the encombant mayor. And so, it has only been since 2005 that wheelchairs, or buggies, or shopping trollies, can be taken onto buses.  How quickly a culture adapts to push off the very people the change was predominately made for…

And so, to the present. Not every bus in the UK is yet wheelchair accessible. After all, the law that all new purchases must be compliant is only 14 years old, and a bus can have a life of 20+ years. But we are finally coming to the end of the old physically inaccessible buses, and entering the era of culturally inaccessible ones. From the point of view of the wheelchair user sitting at the bus stop, unable to catch a bus, a much bigger slap in the face in oh so many ways…

The wheelchair user and the bus.

People who use wheelchairs also need to use buses. There is no getting around this. Some may also use trains, trams, and other public transport methods, but buses are the mainstay of our getting around.  In London, the underground network is particularly inaccessible. There are 270 stations on the Transport for London Underground network. Of these, only 66 have step free access. If you use a wheelchair, and want to make a public transport journey, the chances are buses are your only option for any typical route. Similarly, many people who use wheelchairs can drive, and have adapted cars, but many others either don’t own a car, or for complex reasons could never drive. Equally, calling a cheaper hackney cab is not an option for most electric wheelchair users, you can only utilize considerably more expensive Black Cabs – and even so may be routinely charged double the price of a non-wheelchair using member of the public. If a group of people were at a bus stop, and for some reason buses suddenly stopped running that day, but all other transport continued as normal, it is the wheelchair user would would undoubtedly remain stranded at the bus stop, while the vast majority of other passengers would likely be able to find other options available to them.

Buses are important to many people, but have a place of particularly special importance to wheelchair users

Wheelchairs blocked from buses

A wheelchair user wants to get on a bus. There are any number of hurdles in their way. Its not as simple as it may be for other passengers.

The bus needs to be able to stop along a straight pavement with unbroken curb to be able to extend the ramp. In parts of London, this may not be possible. The ramp needs to be working. They don’t always. However, it is people who create the biggest impediment to wheelchair users getting on buses. The wheelchair space is seldom empty, even when the bus itself has almost no passengers on board. It is one of the favorite spaces for any passenger to occupy. People with luggage occupy it. People with shopping occupy it. People with pushchairs, prams and buggies occupy it. People with shopping trollies occupy it. Men in business suits occupy it with a specific masculinity that precludes them from sitting even on an empty bus with no seats occupied. But this toxic masculinity somehow hampers them from moving when a wheelchair user wants to board, and they can try to refuse. The most talked-about divide is created by the parent with the buggy who refuses to move, but like myself, many other wheelchair users I know complain that those with shopping trollies create more stress, and more obstacles than even the parents with buggies.

The view I take is quite straight-forward and hard-nosed. Wheelchair spaces are for wheelchair users. We fought for them. For decades wheelchair users risked arrest and brutality campaigning and chaining themselves to buses for the right to ride. And they didn’t do it because it was fun. They did it, because they needed it to be able to live at all.

A paraplegic woman is removed from in front of a b

Picture: A disabled woman being pulled backwards by 2 police officers , with bus in background. Picture taken 1994. Source: The Guardian

And it was those brave campaigners, back in the days when I and many of my generation of disabled people had no idea yet that it would ever apply to us, that our current rights were won.

No mothers with prams stood shoulder to shoulder with the disabled campaigners. No women with shopping trollies. No men with large suitcases.  They fight against us now. They didn’t even fight for us back then. They had no need. They could already use the bus. Our rights, once won, added fractionally to there convenience, nothing more. In fairness, they were the days I could still walk. And had a small person in a pram. I always folded my buggy at the stop before boarding because I knew no different, and never felt hard done by for it.

It amazes me that so little time as passed, and yet people have managed to totally forget this. In the first mentioned case above, the judge ruled that it is not discrimination to refuse a wheelchair user a space on a bus, because to do so would inconvenience the mother with a child in a pram. But parents with babies  were always able to use buses, prior to the existence of wheelchair spaces.

Stagecoach East Kent

Picture shows entrance to a stagecoach bus with three steps, separating by a pole.  Source: focustransport.

This picture was taken in 2012 in Cantebury, Kent, and the photoblogger comments that when boarding this bus he witnessed 2 mothers with prams being advised to wait for the next bus, as a low floor bus was right behind. Ten years previously, however, all buses on the route would have looked like this, and any parent would have thought nothing of taking their child out of the pram at the stop, folding the buggy and boarding the bus to sit with child in lap. It was only wheelchairs would could not use these kinds of buses at all.

In the intervening time, a cultural shift has occurred. Wheelchair spaces were created for wheelchair users, but despite the large blue wheelchair icon painted on them, and corresponding signage, they are known in the vernacular as ‘buggy spaces’. For a person in a wheelchair attempting to use one, the daily micro-agressions pile up. People sigh. People tut. People stare. People point and comment out loud about how unfair it is that a wheelchair user us taking up the ‘buggy space’.  And all of this will occur with no parent or pram aboard the bus, it is simply peoples perceptions in case someone else wanted to use that space. It gets a bit tough when, day in and day out, just to get to work and back, a hostile crowd must be faced who will openly express opinions on your existence, and see your very presence as a threat to someone else’s ‘rights’.  It gets even tougher when an occasional unreasonable parent is encountered who argues heavily, throws a strop, and storms off the bus into the pouring rain with a helpless freezing child because she is too lazy to fold her buggy, or indeed listen to reason, and her little drama about how her ‘rights’ are being taken away is more important to her than the well-being of her child.

Wheelchair users often need to use more buses, and stay on them for longer, than other passengers, but are also regularly treated as social pariahs, and made to feel like an inconvenience to others that shouldn’t really be allowed to be there, on each and every bus journey.

What is the source of the problem?

People expect to take things on buses now that they would never have thought to take on a bus 15 years ago.  Although no one seemed to feel the loss before it was indeed possible. Other social changes are undoubtedly part of this. People carry huge amounts of shopping, and transport them in shopping trollies. They could not have done with before wheelchair accessible buses were made mainstream. People carry giant unwieldy luggage around with them, and equally could not have done this is previous years. However, for brevity, this blog entry will focus on buggies, as they are central to the current legal appeals.

Meanwhile, people have come to view ‘rights’ in a way that conflates them with ‘wants’, and have lost all concept of anti-discriminatory practice. However, that is a complicated enough concept that I am leaving it for a subsequent blog entry.

While it is therefore far from the only problem, the one focused on here is the conflict over the wheelchair space between buggies and wheelchairs. And it boils down to a numer of issues.

1. Many buggies do not fold.

2. Many others do fold, but not easily, they are large and awkward.

3. On many buses there is nowhere to put a folded buggy.

4. Bus drivers do not know the rules, or refuse to apply them.

5. Passengers are totally unaware of the rules.

This entire blog, so far, has been written from the point of view of the wheelchair user. But its a constructive exercise to shift focus, and look from the point of view of the mother pushing a baby around in a pram, and conceptualize it from her point of view.

Based on so many hundreds of parents I have ended up chatting with while trying to make space and maneuver onto a bus I would start out by pointing out that, in our still very sexist society, the ‘typical’ parent is still most definitely a mother. Fathers do push buggies onto buses, but its a rarity. So we will talk of the Mum.

First of all, she probably hates her buggy. Most mums I end up chatting to start out by apologizing for how long it takes to fold up – from my point of view, I can assure you I really don’t mind how long it takes. If a mum is wiling to fold at all, I think she’s brilliant. Mums tell me that their buggy was bought by the parents-in-law as a gift, as was never the model they would have chosen, sorry its so large and unwieldy, or they say it was second hand from ebay or a neighbor, and never the one they would have chosen. O they say they did buy it new, but no one warned them they might ever have to fold it on a bs, so they didn’t think to compare it to other models.  These Mums are stressed, and hating the big clunky buggies that it is a fight to fold. most of them are wishing for a small umbrella buggy in that moment, but its not totally within their control.

Once the baby is out of the buggy, there is no where to put it. Chances are, on a typical bus, there is one tiny luggage rack, at about chest height. Its too small for a large buggy, and would take considerable strength to swing a large heavy pram frame up there. So, instead of being able to stow the buggy and sit happily with her child on her knee, she ends up standing uncomfortably, with a child on one hip, or precariously on a seat by themselves, and gripping an unbalanced, large clunky piece of equipment threatening to fall and cause havoc at any moment.

By TFL’s own regulations, a bus driver is not allowed to pull away from the stop until both wheelchair, and buggy are safely in position. However, most Mums don’t know this, and fear a jerking, swerving bus skidding down the road as they try to get settled. Some bus drivers also break the rules, putting the lives of the mothers and the children at risk anyway. A mother folding her buggy and settling her child on a seat needs to be given enough reasonable time to do so.

Other passengers are rude as hell. They won’t necessarily offer the mum a seat for herself and her child/ren. They will take the side of the Mum ‘against’ the wheelchair user, throwing evil looks at the wheelchair, and sympathetic smiles at her, as long as they think she is going to do the ‘typical’ thing and get off the bus, and wait for the next one. But heaven help the Mum that folds her buggy and sits with her child. In that moment she may become as much of a social pariah as the wheelchair users. In Victorian times children were allowed to be seen but not heard. In 2014 London buses children are to be neither seen, nor heard, or all social disapproval breaks out. tethered and tied inside a dark black-interiored pram, and silent, a baby is tolerated. Sitting on Mums knee, gurgling and teaching on her fingers, and its a different story. Adults are allowed to shout on their phone, shout at each other, engage in football chants, but any child that makes a noise, even those tiny baby pleasant happy noises that babies sometimes make, and the mother will be inevitably tutted. It demonstrates something very sick about our society. The general mass of passengers on the bus don’t want wheelchairs in the wheelchair space, they want the buggy there instead – because they neither want to see nor hear the children in those prams.

So, what is needed to solve the problem?

Many of the issues outlined are complex. A cultural shift that acknowledges the right of children to be seen and heard on buses would be hard to achieve, but many other simple and straightforward changes could be enacted.

The most obvious two are a change in bus design to allow for more storage space. Not more space for unfolded buggies – that’s never going to be enough. On a bus with one buggy, two will want on, and a bus with 2 biggies, three will want on. Storage space, that allows buggies to fold, and parents to sit with their children would allow ten buggies and a wheelchair user all on the same bus. It used to be totally normal to have  five or six or more parents with babies sin prams before wheelchair buses, and it could still happen easily by having a floor level storage space where folded buggies could be stacked together.

The second, probably easiest to enact, with longest term significant impact, would be:

a requirement for all buggies to be properly labeled at point of sale.

Why would this help?

Many people end up with buggies that are totally unappropriated for use on public transport. Often, that wasn’t their own choice. TFL does actually have rules that a buggy must fold, or it is not allowed on public transport. Actually, they have a bunch of rules that are never applied. For example, if you want to bring a buggy down an underground escalator, by their regulations, you are required to fold it, but no one ever does. A wheelchair user will, inevitably, due to the pressures of the situation, start off by being aware of the TfL regulations, and make equipment choices based on that. I don’t know a single wheelchair user that hasn’t discussed rechecking TfL regulations before committing to a new piece of expensive equipment. Many scooters and some wheelchairs are just not allowed on the bus, and people who use those have the sense to check in advance.

With buggies its not the same, and there are a number of reasons for this. While a bus driver can often see at a glance what a standard, bus legal chair is and what isn’t, its less easy to see at a glance with buggies. Often, I’ve seen a Mum come at me with a what looks like a big, unwieldy contraption, and think ‘why did the bus driver even let her on’ only to watch, amazed, as she swings the baby onto her hip, and with one click and one kick, the buggy collapses into a tiny neat package that is perfectly stable, and doesn’t even need a luggage rack, as it fits easily under a seat. The next journey I see another buggy, which looks small and lightweight, only to have the parent insist it can not fold and doesn’t have a folding mechanism. When I then point out that taking such a buggy on any bus is illegal, so even dismounting and getting on the next, wheelchair free bus is breaking the rules, the parents tend to state at me slack-jawed, disbelieving.

Buggy retailers have much to answer for. Whether you are a grandparent trying to find the most perfect baby carriage for the grandchild you are delighted to welcome to the world but will rarely see because of distance, or if you are the new, harried Mum searching for a bargain in your price range, if all you have ever seen and been told is that any pram at all can go in the ‘buggy space’ then you are not necessarily going to think to ask about the folding mechanism. But the retailers know better. And they know when they are selling models that are going to be hell on public transport, while the slightly cheaper model next to it would actually be far easier.

Food needs to be labeled for suitability. Children’s car seats need to be labeled for safety. Very many products carry regulated labeling systems giving the consumer information before they buy. There is no reason buggies couldn’t be better labeled at point of sale.

such labling could, possibly, have a traffic light system:

Red: a buggy that does not fold, or folds only into a very large heavy unwieldy package that is unfeasible to support on a bus or tube. Not for public transport users.

Orange: a buggy that folds, but may take two hands to fold, may not fit easily into a luggage rack. More challenging to store on a bus. Suitable for occasional public transport users who are willing to put up with some hassle, in order to have other features not relevant to the bus

Green: a buggy that can be folded quickly and easily with one hand, is lightweight and stows away easily or takes up little room and sit son a stable base when folded so that the parent can forget about it, and sit with their child on tier knee for the journey.

What would such a labeling system achieve? For all newly purchased buggies, a parent would be asked to think for a few minutes while making the purchase as to the suitability of the equipment they were buying. If a parent bought a pushchair that was unsuitable for public transport, they would know that they were doing so. And it becomes easier to get tough and deny access, as there is no pretense left. The buggy pusher knows they are making a consumer choice to own that particular model. Its not discrimination to refuse them the wheelchair space, or blocking the gangway with their buggy, as they an everyone else can accept that they are making a consumer choice, and unlike the wheelchair user, have plenty of other options available to them, so everyone can sit in comfort on the bus together.

It would benefit wheelchair users. It would benefit buggy users. It would benefit everyone. And help end the wheelchair versus buggy wars on buses.

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Left Unity founding conference – an incredible birth but an accessibility nightmare

Yesterday, the founding conference for a new left wing political party was held in London. And yet again, I was strongly reminded of Saul Alinsky, who once famously said ‘Young protagonists … have no illusions about the system, but plenty of illusions about the way to change the world’. It was an exciting and empowering day, with a hopeful sense that another way really is possible. On the other hand, the phrase ‘couldn’t organize a piss up in a brewery’ comes to mind. Inclusion was given a high visibility in some way – in some uncomfortable ways that seemed quite strained – and yet, the event was far from inclusive, and resulted in significant exclusion of groups of people, including disabled people and parents with young children, and was as notably white as a tired old cynic like myself would predict in advance. None of this surprised me. I saw no new exclusion at the Left Unity conference. Everything that happened there has happened just as much, or more so, at the People’s Assemblies, at the Benefit Justice summits, and a host of other places. But none of it is necessary. It all originates from small groups of power holders, who must cling to their power at all costs, and a refusal to consider any alternative way of working.

The day

So, what was it actually like on the day? Bearing in mind here, please, I am describing one conference. NOTHING was actually unusual about any of this, it is not specific to Left Unity as a new party. I am describing this here purely as an example of any such event. This is not about bashing Left Unity, I still carry much hope and commitment for the party. I just would really love to see a radical shift in the way they organize conferences for future events to occur. Because I am silly and naive and think that might actually happen. It is about raising issues about how the way the left is currently operating is so exclusionary.

First of all, it started at 9am. To travel across London on public transport in a wheelchair, this means 3 hours, and therefore to make it on time, I would have had to have left my house at 6am, rising at 5am. After a long exhausting week at work, there was just no way that was going to happen. As it was, I managed to get up at seven, out the door at eight, and arrive at 11am, two hours after the start. I will also mention, of course, that if TFL was actually accessible, I could make it from my house to the venue in one hour.

We roll up, and know we are in the right place, due to the large number of people outside smoking, all holding ‘left unity’ voting cards. Based on this visual evidence, one could be forgiven for assuming that we had coincidentally managed to make it for a break time, and that it would, at least, be a good time to slot in and figure out what we had missed. A slight kafuffle at the desk, as they didn’t have any record of us registering or paying. (Note to self: check bank records and see if that check was ever cashed).

The building

And then, to take stock of the building… it was, in a strictly technical sense, ‘accessible’ in that it met the very basic minimum requirement. However, it did nothing to promote the independence of disabled people. The doors were all heavy double doors, with one side kept bolted closed, and just too narrow for a chair. There were no electronic buttons. Which meant that the only way a person in a wheelchair could get through any door was with staff help. There was only one accessible toilet, with two other sets of toilets. Not only were these not properly wheelchair accessible, but they were also up flights of stairs, with no lift access. Therefore the numbers needing to use the one ground floor wheelchair equipped loo were significantly increased, as they now included a large number of people who could have used a ‘standard’ loo, but couldn’t climb stairs with ease. This toilet was also kept locked, but not with a radar key, so on the rare occasion there was no que, the person needing the accessible toilet had to find a member of staff to ask permission to have a pee, like a six year old in school.

Inside the man hall there was an induction loop, but apparently it only covered the first two rows of seats. There was no signage to indicate that this was the case, and no request of any sort for delegates in general to leave the first two rows for those that needed them. There was no palintypist. There was no sign language interpreter.

The lunch facilities were very poor. There was one pizzeria that served coffees and sandwiches, and it had a que that took over three quarters of an hour during the main lunch break. No information was given to delegates in any format about how they could source refreshments to get through the day.

 

The conference

Events on the day consisted of voting for amendments to the new constitution. According to the published agenda there were supposed to be several other items, but from 11am when we arrived, the constitution was already under discussion. Election of tellers had presumably happened in that first hour we missed, and it’s possible that the agenda item ‘safe spaces policy’ had also been addressed – we will never know. Any discussion of ‘priority campaigns’ despite having been allocated an hour and a half, was simply dropped, as was ‘election strategy’.

In short, therefore, the entire day consisted only of documentary amendments. Some of them were for ‘platforms’ and the rest were for the constitution. (Do not ask me to explain what the ‘platforms’ were about. I have, quite literally, not a notion). The rest of it followed a 58 page booklet (with addition amendment sheet attached). In point ten font, single line spaced. At least it was a sans serif font they used. Thank heavens for small mercies! But it didn’t follow this booklet in any order. So we would be on an amendment on page 37 one minute, and then be asked to switch to page 24. And each amendment was simply named by itself. So it might read something as bizarre as ‘delete the word elephant’ with no context whatsoever, and no clue in the information given where the word ‘elephant’ might have appeared in the original draft constitution. And then everyone had to hold up voting cards to say whether the word ‘elephant’ should be deleted, and then all the votes had to be manually counted. If, like myself, you can’t actually hold your hand in the air at all, never mind keep it there for several minutes while tellers counted, you were fucked. No votes for cripples here!

Despite this terrible structure, some interesting debates nonetheless got raised. There were moments I became, by turn, engrossed and enraged. The debate over whether there should be a requirement that the gender division must be 50/50 for representatives produced some excellent speakers (and some that truly raised my ire as well, of course) and the debate as to whether Northern Ireland should be allowed to set up a Left Unity national section if people living there so wished had me wishing my dalek came with real laser attachments. These were issues that needed to be addressed in the constitution, and they were important to debate.

The problem was how they were debated. In other words, almost not at all. A few white men grandstanding, and being self-important, and that was it. Then on to the next issue, and the next one, and the one after that. The single biggest failing was that the time of the grandstanders was considered incredibly precious, the time of those sitting enduring their grandstanding, utterly worthless. No breaks were given. Far too few were built into the programme in advance, and as part of the running order, the mini 10 minute breaks were cancelled, leaving only the half hour lunch break in existence for a day that ran from nine to five.

Why it is so bad to structure it in this way?

Looking at what actually occurred, two inextricably interlinked issues arise. One is the overall issue of effectiveness and whether social change can be created. The other is the issue of access. From Paulo Freire, to Saul Alinsky, and all the way back to that great Italian Marxist Antonio Gramsci, it has been being pointed out that the only way that social change can happen is through dialogue. And so it is deeply ironic that any hint of actual dialogue occurring is something the left seems phobic of, and willing to go to any lengths to avoid. Yes, we could discuss an issue, exchange views, educate ourselves, see through the hegemonic oppression by learning from each other, but no, we can’t do that. Its far more ‘lefty’ to allow white men to grandstand at everyone else’s cost. If white men grandstanding changed the world, we would have a revolution by noon on Tuesday every other week. But it’s all we know, so it’s all we do. What actually happens when white men grandstand?

This is what happens:

1.       Nobody listens.

Seriously. Nobody actually listens. The average university graduates attention span used to be calculated at 40 minutes. It is my personal belief, as a university lecturer, that has fallen dramatically as a result of various social changes. When I teach, I am well aware that, after half an hour on any particular topic, very considerably less than 50% of my class are taking in anything any more, and this is confirmed by any assessments I give out, and also by many structured research projects. After the half hour point, a significant change is required, so that people are clearly listening to something different. After an hour, a proper break is needed. If that doesn’t happen, the actual amount of information being taken in by anyone is abysmally low.

2.       People become confused

When people struggle to follow the conversation because their maximum attention span has been used up, they will become confused. This was very evident on the day. We had scenarios in the voting where the chair had to sternly tell people that their voting made no sense. If item number 57, on clause 134b, subsection ixxv requires the deletion of all references to zoo animals (humorous non-example, obviously) and that is passed, then later vote number 73 on clause 520a subsection vi can’t insert a mention to giraffes. But people were seriously not getting it, and voting for items, (of actual serious importance, not about zoo animals, obviously), but in just such contradictory ways. And once the chair pointed out ‘this makes no sense’ everyone changed their vote, but clearly no one had a clue what they were voting for, which makes a mockery of the entire process.

3.       People get manipulated into views they do not actually hold.

It’s just as effective as any other form of torture. If you are sitting there, with a nasty pain in your back because you have been stuck in this hellish chair for three hours now, with your legs tightly crossed because you need the loo, and are ready to rip someone’s head off for want of a cigarette, then you will vote for coco the clown to be elected party mascot, whether you think it’s a good idea or not. Torture is effective. Canvas views after any meeting, in a political or a business setting, and you find that you can manipulate anyone into agreeing to anything, by trapping them in a meeting for long enough. This is not democracy. However, the manipulation works deeper than that. People will also become progressively more and more swayed by novelty and by charisma instead of by logic the longer this goes on. There was one very clear example at the conference yesterday. The entire floor voted very clearly one way. There was a temper tantrum from a group. Everyone changed their vote. The point that was passed, I believe personally, was ideologically abhorrent, and has the potential to kill the party before it ever takes off. And it wasn’t democracy. It was manipulation. And it was done so skillfully. Because the white, male grandstanders are very skilled at this. And they know exactly what they are doing.

4.       People physically hurt

Pain is part of the torture. It is part of the torture for everyone. It can be greatly intensified for specific individuals. If you have a bad back. A weak bladder. Are just a heavy smoker. If you are pregnant. This is not only a disability issue, actually it’s an everyone issue, but it is an issue that the disability group made very clear to the organisers in advance, and they chose to ignore. It is an issue that is often greatly intensified if you have a disability of any sort. And that’s why it’s so important to remember that men are less likely to develop disabilities and long term health complains than women. White, British born less likely than black or ethnic minorities. Straight are less likely than gay. Middle class less likely than working class. Women without children less likely than women with children. So ‘just’ deciding that some white man really, really needs five minutes more floor time and everyone else must sacrifice their hourly 5 minute comfort break for him, is a very highly effective way of ensuring that, three hours in, it is only some (not even all) white, cis-gendered, straight men who have not experienced poverty can have any real participation, and everyone else is effectively annihilated from the proceedings. Because all the rest of us are so busy twisting in our chairs waiting for the torture to end that we really can’t follow what’s happening at all.

5.       People experience high stress levels

Stress is a nasty thing. It raises your blood pressure. It raises your pulse rate. It slows down your digestive system. It does all kinds of things to your body. Sitting for three hours in a meeting will stress anyone. If you are not neuro-typical this is magnified manifold. For myself personally, consistent noise and bright lights both cause a very physical stress reaction in me that has nothing to do with my emotional state, and most of the time I am 100% in control of. But after a 3 hour meeting with no break, I’m not. I’m letting the world see my quirks, and need to get to a bathroom and flap about to calm myself like other people need air to breathe. It genuinely makes me feel like I am suffocating. One in twenty people have some aspect of neuro-diversity in their make-up. The majority of these it is just a few mild quirks, which most of the time would not be a disability. But put them in a three hour meeting with no break… and they might not even understand why they just become so much more stressed than others around them. That’s one in twenty people. So, in a conference hall of 500 people, that’s twenty five people that you are actually hurting in a very real, intense physical and psychological way by cancelling the comfort break. And then of course there are all the other reasons other people will be hurt, not just neuro-diversity issues. Worth bearing in mind.

6.       People actually leave.

Remember all those people smoking outside when we arrived? Even though it wasn’t actually a break time, and the conference was still in session? Yeah, that’s what happens. People can’t actually manage, so they vote with their feet. I see this all the time at all kinds of meetings, and it always amazes me the way the speakers and organisers don’t seem to notice. As a lecturer, if my students aren’t coming to class, or are getting bored and leaving half way through, I’m in trouble. So if it ever happened, I would find the problem fast, and fix it. But that’s the problem with grandstanding. It’s not about anyone actually listening, it’s about feeling self-important. So the grandstanders grandstand even as everyone literally walks away, and they do not appear to even notice, so unimportant is any actual dialogue to them.

7.       Existing power structures in society become reinforced, and no opportunity to transform them can be created.

A picture tells a thousand words. I have spent today on facebook telling people not to be overly swayed by the photos littering facebook, twitter and elsewhere in the cyber sphere today. People who were thinking of engaging, and have now seen the pictures of 100% white and 95% male attendees in the front few rows, and assumes, well obviously Left Unity isn’t a party for ‘people like us’ after all. I have been telling people, seriously, there were many black and ethnic minority people present. There really were, pinky swear. And they are replying ‘but I’ve seen the pictures, I know that’s not true.

So all those people who were thinking of joining, but needed a little time and to see how things unfolded as they were skeptical that any party structure would be non-sexist, non-racist and generally non-idiotic, all those who are not privileged, white, cis-gendered, heterosexual, able-bodied men – will they now join? No. So who will Left Unity end up representing? – Do I really need to spell it out?

‘What is to be Done?’

That age old question of the left – what is to be done? It’s not rocket science. You show some will to make your meetings more accessible and interactive. You have belief in people, and belief in dialogue. Trust the process.

From the very mind-numbingly simple to the slightly more complicated, here’s some things that can be done. And by doing any or all of these, real inclusion will be helped along, and future photos won’t only show white, able-bodied men in the front seats.

1.       Have comfort breaks hourly. No matter what.

It does not matter if the reincarnation of Karl Marx himself has just reached the central point of the one concept that will change the course of history. If it’s a full hour in, no one is listening anyway. Have a klaxon. Sound it. That’s break time.

This issue was raised over and over again, and what we got in response was a patronizing metaphorical pat on the head, accompanied by a verbal response of ‘we’ll try’. Pardon me for feeling massively patronized and silenced by that. Yoda said it best. Do. Or do not. There is no ‘try’. What the heck does ‘try’ mean in this kind of circumstance? We are not talking about climbing Mount Everest here.

2.       Sort out the seating.

People who cannot stand need seats. People who need to physically move around need to be on the end of rows so they can stand up and sort their back out every 20 minutes, and sit again. People who need to lip read need to be at the front. People who need induction loops need to be in the right part of the room. You put a reserved sign on the front three rows of seats, and a good selection of edge of row seats as well. And you do NOT tolerate people removing those signs and sitting there anyway. Which is exactly what happened. One specific caucus came and took up the first three rows, which is why all photos of the audience gave such a negative message of being white men only. You deal with those rude people. That’s patriarchal colonialism in action, and I don’t care if they call themselves communists. You call them on their privileged nonsense.

3.       Use technology wisely.

Electronic voting is not new. Nor is it expensive. The university right next door to where we were have it built into the desks in some of their larger lecture theaters. If everyone had an electronic voting device, the voting time would have been eliminated, and at least one third of the time would have been saved for real discussion – never mind the issue that I and several others had physically voting as it required holding our hands for prolonged periods in the air which we could not do.

4.       Consult in meaningful ways.

Ask people what works for them. Listen to what they say. Consult widely. No one would ever dream that one white man speaks for every white man, and just so, one disabled person does not speak for every disabled person, one mother does not speak for everyone with childcare needs. Do not ignore their answer, or patronize, and then use the fact that you technically ‘consulted’ as an opt-out clause for your bad behavior. That’s not consultation. Get some real dialogue and discussion going.

5.       Educate yourself on access and inclusion.

There are some tried and tested ways of doing things. Print materials of 12 font or above, double line spaced, sans serif font, are one small example. If it doesn’t meet that minimum requirement it’s not accessible at all. I’m not talking about the large print version here, that’s a separate issue. And here’s another lesson from the classroom. What’s good for a specific group is good for everyone. Whereas if you only teach to the majority you are excluding more people than you know. Not everyone has a label. Labels are for jam jars. Have you checked what’s good practice around key issues such as visual impairments, hearing impairments, neuro-diversity? If you haven’t, you should not be organizing any mass meetings yet. If you have, then you will not only be helping those people with those specific issues, but making an event that will somehow just seem easier to interact with for everybody.

6.       Get the best venue possible.

Of course this is a tricky one, as venue hire creates one of the biggest barriers to holding major events, and venues can be so terrible. Speaking for myself personally, I am often willing to tolerate a large amount of imperfection in a venue if it is obvious that everything else has been set up to make things as accessible as possible. We can’t wish buildings into existence at an affordable rent that don’t actually exist. However, on the other hand, there are some venues out there that are considerably better than others. And a venue telling you it is accessible doesn’t make it so, in reality. The people you consult with can also help you scout out venues. People with disabilities should be involved in the selection process, not some tokenistic view of an already confirmed booking the night before.

7.       Use Participatory Active methods.

We sat for an entire day having teeth grindingly tedious votes on individual wording issues for a constitution. It was important. The constitution has to be got right. But not necessarily in that way. Participatory Action methods work. They work well. They produce happier participants who feel happier with the outcome. And save very significant amounts of time. Which can then be used for real discourse on policy issues. The stuff that’s even more important to get right. What could be done here using participatory action methods? One simple solution (among many others) would be to put large print versions of the constitution on large boards along the wall, with all proposed amendments. Give every participant a set number of votes (pins). Say ten. One participant may feel so strongly about one proposed change they vote for that ten times, and nothing else. Another may vote once for ten different amendments. They put their pins on what they want amended. If you combine this by also having some pictorial representation of the key points under discussion for those with difficulty engaging with print text in that way, and several volunteers ready to verbally run through each issue on a particular board for those with visual impairments, and you would be surprised how, even for the steering committee preparing these materials, everything will become clearer and more accessible. Suddenly the constitution would feel like a living document and something that really reflects a set of hopes and dreams for the future, not a dry set of legalese. And the entire voting could be allocated an hour and a half, maybe 2, during which time people would also be milling around, talking with each other, networking and benefiting. And that session would be so different from preceding and following talk based discussion sessions that you can keep breaks short, because people are getting the breaks they need through change alone, and keeping focus and attention.

8.       Promote dialogue.

This is a tenant of faith for me, that I won’t go into here, or I would need another ten thousand words, and still not have finished. But people need to interact with each other. And people don’t. We have speakers, and none of them ever address what the other speakers said, and if we have ‘questions’ from the floor they are never questions, just floor speakers. Communication is a two way process. If dialogue, proper two way conversation, is not happening, no learning is happening. And if we are not learning from each other, we will change nothing. But managing this on a 500 person conference floor is frankly impossible. Which is why break out discussions, workshops and small group interaction with feedback to the main floor is needed.

9.       Be creative.

We had the man in the Dr. Who scarf propose a platform (or was it an amendment?) that Left Unity be a creative party that uses different ways of working. And the women who co-proposed with him read a poem as an example of how this can trigger debate and awareness of issues. And the seat snatchers rolled their eyes, and muttered protest, and sniggered. It was passed as a resolution, but just like the ‘we’ll try’ attitude to break times, from that moment on seemed totally ignored. Later, a contributor sang a verse of a song to make a key point in a way that worked for her. I actually disagreed with the point that she was making, but respected her delivery of it. But again the seat-snatchers mocked. I do not know why creative, interactive ways of working that genuinely promote dialogue and thought seem so threatening to some people (although I have my theories, and it all comes back to white male, privilege based power, and an attempt to cling to it at all costs). There are many ways of promoting dialogue. The more creative the better. It’s hard to do, and this is the appropriate place to use the phrase we’ll try. Try, and not be afraid to fail, and try something new. And in the process something wonderful and inclusive will happen.

Yesterday, the founding conference of Left Unity took place. I was wildly excited to feel like a true founding member of something that I have incredible hopes and aspirations for. The day itself was nothing short of a stressful, painful nightmare to endure. It was understandable teething pains in many ways, but strictly speaking unnecessary. Access could have been better. A lot better. For things to improve lip service to disability issues, or inclusion, will not be enough. The root causes of the pervasiveness of power divided by gender, race, class, sexuality, disability family and other issues will need to be addressed, and an honest, open dialogue about the nature of privilege. I still believe it’s possible.

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Benefit Fraud part two – state control of bodies

In my previous post I took a macro view of the topic of ‘Benefit Fraud’. Today I am zooming in the lens, and taking a closer, micro view of the human experience. Who commits benefit fraud? What can we learn by stopping and examining cases of benefit fraud? Who is at risk of an accusation of benefit fraud? From two days of reading endless reports of cases, three themes jump out at me starkly.

People vulnerable to accusations of benefit fraud are those who:

  • Have family structures that vary from idealised conceptions of what ‘The Family’ is and fail to conform to ridged categories of ‘married couple’, ‘single parent’ etc.
  • Have disabilities, impairments or chronic illnesses that fail to conform to ridged categories of what a ‘disability’ is, and are variable.
  • Have emotional and/or intellectual vulnerabilities, struggle to understand the system, or the system just has no category for their specific vulnerability.

In other words, accusations and prosecutions for Benefit Fraud push us all into narrow boxes of conformity and normalisation. Our families, our bodies, our minds MUST sit within clear boxes, because if there is any lack of clarity about where we sit, we could be awarded a benefit one day, and accused of having made a fraudulent claim, and prosecuted, the next. Being outside ‘the category’ leaves us vulnerable to prosecution.

 

Having read endless online stories I have decided to present some ‘composite cases’. In each case, I could provide a few stories which together make the same points, with links, but something about that seems slightly wrong to do. Each real human is open to criticism, and real names are used in every media report.

 

When is a single parent not a single parent?

‘Jane’ lives with her baby in a 2 bed, private rented flat. She claims child tax credit and housing benefit and has a small part time job. Some time after the birth Jane met ‘Peter’ and they began a tumultuous on-again, off again relationship. Peter lives with his parents, and also has a casual relationship with another woman with whom he has a child. Peter financially supports his child, and does not contribute in any way to the finances of Jane’s household.

Following a tip-off that Jane is in fact cohabiting made by a disgruntled neighbour, the DWP begin a surveillance operation. They record over a week, and find that Peter stayed overnight with Jane on four occasions. This is more than half the week, so technically Jane is cohabiting.

Jane is prosecuted, and at first is adamant that Peter is not living with her, he just stays over a lot, and does not contribute to her finances. Her lawyer explains that does not matter. It is only the number of nights he slept there that count in law. On advice from her solicitor, Jane pleads guilty to benefit fraud. She is given a non-custodial sentence and ordered to pay back the full amount of benefit that she ‘wrongly’ claimed.

Real families are complex, messy, and diverse.

The legal system assumes we fit into narrow boxes. The reality of peoples lives are that we often exist outside these narrow boxes, our families shift, alter, relationships form and dissolve. It’s all part of the joys and pains of life.

Gender plays a huge role in those specific cases. Why was Jane prosecuted, and not Peter? Because the claim was in her name, so she was the only one who ‘broke the law’. Peter was staying over very regularly, but not contributing towards even the additional costs Jane incurred by having him there.

30 years ago, Ann Oakley published studies of family life in the UK, looking at the gender divisions. One of the characteristics she found that truly marked gender differences was a pervasive attitude that men owned their own money, and from this they may support their families. Women on the other hand, were financially dependent on their families. Even where they had income of their own, this was seen, psychologically and culturally, as ‘family money’.

Studies I carried out on families based on cohabitation in our times found that cohabitation intensified these differences. Every penny of a woman’s income was still conceptualised as belonging to ‘the family’, but the percentage of wages ‘handed up’ by cohabiting men had dropped dramatically, sometimes down to zero. Prior to the prosecution, it probably never occurred to either Jane, or Peter, that she should be financially dependent on him. However, the state takes a different view, forcing a normalisation of family patterns on everyone, but policing this by targeting only the ‘deviant’ women who dare make claims for benefits/financial independence and not the men who retain their own earnings and do not contribute to their costs of living.

Other typical cases that emerged here, all with the identical pattern of prosecution of the woman only, also occur where, following a divorce, a couple continue to reside at the same address. ‘Ann’ and ‘Barry’ got divorced several years ago. Following a year of living apart and fighting endlessly about the sale of their house, they reached a point of greater amicability. With the kids grown and moved out, their nice big 3 bed house could actually make 2 pleasant little flats if Ann took the downstairs and Barry took the upstairs. A bit of construction work later, and they were good to go. Until Ann, but not Barry, was prosecuted for benefit fraud for not declaring that she was once again cohabiting with her husband. It’s the exact same pattern. And so, Ann, a loving mother and doting granny, is publicly humiliated across all the tabloids, her neighbors who were once friends now shun her, and she is driven from her lifetime home which must be sold, to pay back money owing to the DWP.

Men have some tiny leeway, but women MUST conform to set family patterns, or pay the price.

When is a disability not a disability?

‘Mary’ became quite unwell a few years go, and the doctors never fully got to the bottom of what was wrong. She goes through periods where just getting out of bed causes her terrible pain and fatigue, During the ‘bad bouts’ which last weeks or months she is almost completely housebound, and can barely hobble about with a stick, or even shower or feed herself.  Forced to give up her career she had worked for years on, Mary nonetheless determinedly  sets up her own small consultancy business, and earns a considerably more modest living by taking in the amount of business she is capable of handling on her good days and good hours. She claims DLA and Access to Work to help make a contribution to the raised costs she experiences due to her illness.

Not even sure what is wrong, the doctors main advice to Mary is basic lifestyle advice. ‘Eat well, exercise more’. It’s tough, but Mary is determined, and does what she can. The last flare has died down and no new flare is threatening yet. Mary is given a puppy who really helps with her mental health in particular as she is incredibly fond of the little rascal. Seeing as she is going through a good phase, she even manages to bring it for a walk every day at about midday when she first manages to get herself up and dressed. Walking over to the park every day and throwing a ball for this little bit of fluff is doing her the power of good, and for the first time in several years she begins to feel like she might even be getting properly better, although she still has a long way to go, and these daily stints out of the house do exhaust her deeply.

The DWP surveillance van records her walking her dog daily without the use of walking aids, and she is prosecuted for benefit fraud. At first, Mary hotly denies any wrong doing, but on legal advice concedes that her condition had improved, and she should have informed the DWP. She pleads guilty to benefit fraud, and is given a short suspended sentence, as well as an order to repay the mis-claimed benefit (calculated since the start of her last claim, not when her last flare up ended). Her case is splashed all over the tabloids, she is humiliated by her neighbours, and looses most of her meager business now she must carry the added burden of being a convicted ‘benefits fraudster’.

Real disabilities and illnesses are often variable, complex, messy and hard to name

Governments police bodies, and the performance of our bodies, far more than we know. At risk of veering into a Foucauldian rant here, I will restrain myself and say that our very bodies can often be battlegrounds of power and control, with power and extensive ‘normalisation’ wielded by governments and the medical professions. But real bodies are not cardboard cut-outs of what they should be, and real illnesses often fail to conform to pre-set expectations of what a ‘disability’ should look like. For starters, ‘Mary’ was more ill than disabled. She would not have been competing in the paralympics any time soon.

Less pronounced than the case above about families, but there are also gender and race intersectionalities here. Women, and BME groups, are at higher risk of developing long term chronic health conditions that are variable and that defy easy diagnosis.

Prosecutions for fraud specifically related to disability benefits are the lowest of all forms of fraud. However, as the 2 day trawl of cases I have done showed, they are most likely to hit the tabloids, with public humiliation of the victims. They also play heavily on our human inability to truly comprehend pain, illness and impairment until, and sometimes even when, we ourselves suffer from it.

A healthy person catches the flu. They have shivers, chills, vomiting, hurt all over, and feel deeply, impossibly miserable for a week. And then get better. Feeling sick makes them feel unhappy. Feeling sick makes them not able to leave the sofa or bed. But what if you have low-grade fluish symptoms ongoing for years? As time goes by you stop being miserable every second of every day (although it almost certainly will take a toll on your mental health as well). But you learn to shut off the sick feeling for little snatches and be happy, drag yourself out of bed and walk the dog for 10 minutes, even if you then have to spend 2 hours in bed recovering from that. And face the endless comments. ‘But you don’t look sick’. Which for some tips over into ‘so you must be a benefits fraudster’, and for some of those, real prosecutions, and lives destroyed.

Prosecutions for benefit fraud are based on, and play heavily on, public perceptions of ‘what it means to be disabled’ drawing on tight, narrow, rigidly policed ideas of pain, suffering, and the sick or disabled body, and what they are supposed to look like, to non-disabled people. What disability and long-term sickness looks like to the disabled and long term sick matters not a jot in this heartless system.

Grief and vulnerability

When reading through many, many case studies of benefit fraud I found just what I expected to find. Patterns of inequality of race, of gender, of class, of poverty. Benefit fraud is a crime of the ‘have-not’s’ and that did not surprise me. What did jump out at me unexpectedly was an associating with grief. Story after story detailed a falling foul of the system by someone who had

  • just been divorced, or
  • just lost a parent, or most often
  • just lost a spouse or life partner

These people had been catapulted into financial chaos and were groping around for answers. But they were also making decisions when in the depths of grief when the original, ‘fraudulent’ claims for welfare were being made.

I don’t know why this surprised me so much, I should have know. When I think back to my former career as a Community Worker I can think of endless people coming into the family center raging because they had been turned down for benefits that they thought they had been entitled to, but weren’t. They were always people in crisis. Always. And grief is a major trigger for crisis. Grief comes in many forms, and so does shock. A grandmother finds herself caring for her grandchildren full time because a child has died or gone to prison for a long stretch. This is a crisis. A mother finds herself with no food to feed her children after the loss of her husband, and his salary. This is a crisis. And people in these crises need to make rapid financial decisions, at a time when they are dealing with a giant emotional load that has nothing to do with their finances. It’s easy to take advice from a neighbour. ‘Why not apply for X benefit, that’s what I get’ and not read the small print of the claim forms because that person is at a point where just reading the full details is beyond their capacity due to grief, depression and worry. But applying for the same benefit your neighbour is on is a little like taking the same prescription medication your neighbour is on. If it hasn’t been prescribed by your doctor for you, its probably a very bad idea. Most people who apply for an inappropriate benefit for their exact circumstances will simply be denied. But if someone slips through the net … it can later be ‘benefit fraud’.

But there WAS a system in place to help with this problem. CAB advisers, social workers, community workers, even free legal aid advice if things have already stated to go a bit awry. Its funny, isn’t it, how a government so determined to ensure there is no benefit fraud of any sort is also so determinately stripping away the system of advice and support to people in a crisis who have the skills an experience to guide people towards the right benefit for their circumstances.

What do we learn from this?

And so, to finish up. I spent two days searching for, and reading, every reported case of benefit fraud I could find to try and better understand the fear and torment this issue is currently causing in society. I don’t recommend, if you don’t have to, that you do this. The cases are often sad, upsetting, irritating and enraging. Occasionally you read about a person and just want to find them and give them a good hard slap. More often you want to yell ‘were you really that stupid, did you not know how the system works?’

But in the end, I just became convinced that the benefit fraud ‘industry’ – by which I mean the combined efforts of the DWP and the people they use to investigate and prosecute benefit fraud, the government and the way they use cases as propaganda, and the tabloid press, and the way they report on such cases, – this industry is in fact a significant vehicle for conformity and normalisation. Forcing our visible bodies, and our visible actions with our bodies, not least our sexual relations and choice of sexual partners, into ridged, state sanctioned boxes. Those who are poor, those who are sick, those who are grieving and confused are cannon fodder to keep the rest of us complaint. Horror stories to be convicted and splash across the tabloids to tell the rest of us that if we must be single parents, at least do it in the ‘right’ way, if we must be sick or disabled, do it in the state sanctioned and approved ‘right’ way, if we must be sad, and grieving and in crisis at any point in our lives, do it by ‘their’ script, and don’t dare ever think of not fitting into their ticky little boxes of conformity.

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Benefit Fraud – the greatest swindle of all (part one)

Benefit Fraud. A huge problem that has bankrupted the country, carried out by nasty, cunning criminals living large on our tax payments having 5 holidays in the Bahamas per year while we the great and good work ourselves to an early grave paying for it all. Right? Wrong! Oh, there has been a swindle alright. A huge swindle of epic proportions. And it is this. We have been lied to. Successive governments have repeatedly and unrelentingly lied to us, through implication, omission and outright falsehood. They told us about a problem that does not exist. And while they lied, they stole our welfare state, convincing us it was all for our own good, to solve this big, non-existent ‘problem’.

How has this happened? Well, first of all, if you tell a lie often enough, people come to believe it. Secondly, if you include numbers, it makes it all sound much more ‘valid’ and ‘factual’ so people accept it as fact, without really thinking what those numbers actually mean. Most numbers are truly only useful in comparison. And almost any person without a degree in maths is particularly poor at understanding either very big numbers, or very small numbers. An average person has no difficulty understanding the value of 10 or 100 or even 1000 because these are figures that we can attach real understanding to. Ten pounds will buy me a cinema ticket and a bottle of coke to drink in the cinema. Or top up my phone. 100 pounds will pay my electricity bill. 1000 pounds will pay my rent. But a million pounds? I don’t know what I’d do with a million pounds, because it is far outside my experience, and a figure I find it hard to imagine for real. How about a billion? Intellectually, in one way I know that a billion is one thousand millions, but still I find it challenging to actually think about that much. In fact, almost all humans are incredibly bad at thinking about really big numbers or amounts. If the telly tells us each evening that something cost a million, or a billion, or a trillion, it really doesn’t matter which, because we are going to sit there and think ‘wow, that’s a lot of money’. Governments know this perfectly well, and use this against us, as just one of their many tools they have in their arsenal to brainwash us into compliance.

So now, lets actually look at just how much benefit fraud really costs, and then, to make the figures valid, compare that with other costs in the same region.

  • Benefit fraud
  • Theft of copper wire from train tracks
  • missed NHS appointments
  • absence from work due to employment related stress and bullying

and one thing that costs the same as those four things put together:

  • Absenteeism during the world cup

Benefit Fraud

Benefit fraud, according to the governments own figures, costs 1.1 billion pounds each year. Benefit fraud and error, taken together, equate to 3.5 billion. In other words, 1.1 billion goes to people who claim something they shouldn’t have claimed, but the overall figure for mistakes for which the DWP are responsible for is more than three times, that, and very significantly, underpayments significantly outstrip overpayments.

More money is not paid to people who have claimed for it and been wrongly turned down than is lost through people wrongly claiming money to which they are not entitled.

We can then turn to look at  people who do not even attempt to claim, but would be eligible if they were to put in an application. Here, we find figures that truly become staggering. 2.8 billion in pension credit goes unclaimed every year. So, if there was no fraud whatsoever, and full take up of just ONE of many benefits, pension credit, the DWP purse would be down by 1.7 billion. It is indeed a sad sign of a broken system when those struggling on the breadline or below feel unable or unwilling to claim back that for which they paid their tax all their working lives.

Far more useful that a floating, uncontextualized gross number such as ‘1.1 billion’ is to consider the percentage of fraud to the overall welfare budget – and here we find that the DWPs own calculation for fraud and error is 2% – but we also know that therefore the true fraud figure will be less than 1% as there is significantly more error than fraud in the system.

And so, that benefit fraud. An issue that results in 24,100,000 hits on google for the term ‘benefit fraud UK’ , multiple press releases, ‘strategies’ to deal with it from every major party, and a constant onslaught of documentaries and news reports as well as endless web sites, facebook pages and on line interest. I won’t even begin to describe the nastiness, vitriol and disability hate I saw when I experimented to see if there was a hashtag #benefitfraud. And it is all about convincing us about a ‘Huge’ problem so we will be compliant while our welfare state is stolen. So now, lets compare it with other issues that cost the same

Theft of Copper wire from train tracks

Theft of copper wire from train tracks, as calculated by the government, costs the economy 1 billion. In 2011 there were 2,627 thefts of copper wire from railway tracks. Each one of these thefts leads to delayed and canceled trains, while rail staff struggle to rapidly replace the stolen wire. In parts of the north of England there have been weeks on end where copper wire was stolen from the same strip of railway track every single night leading to the necessity of having security guards patrolling track-sides all night long.

In response to this problem the government passed new regulations. Photo ID is now required of any person attempting to sell scrap metal, and cash payments are now against the law in this trade. These new regulations have coincided with a 50% reduction in the levels of theft, bringing the total lost down to the current 1 billion level.

And so, in terms of the financial hit, copper wire theft from train tracks equates closely with benefit fraud (if we choose to ignore benefit underpayments etc which actually more than cancel it out anyway) On the other hand, it has never been an election issue, no party has policies on the subject, while only one documentary has ever been produced on the subject on British TV. A twitter hashtag #coppertheft exists, but only security companies use it to advertise their security systems. One face-book group exists, with 16 ‘likes’. Not a lot of panic in society about this, although it costs the same.

Missed NHS appointments

Every year about one in ten booked appointments with the NHS are missed without cancellation. A rough estimation of the direct cost of these missed appointments is not the easiest figure to get, and different reports put it at anything from 500 million to 700 million. Guesstimates which include the cost of increased use of other NHS facilities, such as A&E as a consequence of skipped appointments brings us once more into the realm of a social behavior which costs 1 billion.

Unlike copper wire theft, which is unambiguously criminal behaviour, missing an appointment with a doctor, nurse, physio etc without cancelling could be for a range of very legitimate reason. Like this poor man, you might be too ill to get up off the floor and get to the surgery. I know, I’ve been there, allbeit with less tragic consequences. But I also have a bad habit of missing dentists appointments because, no matter how many notes I put to myself around the house, or how big I write the appointment in my diary, on the day I just forget. I hate the dentist so much, its like I don’t want to go so much, I genuinely forget, until its an hour too late, and I find myself once more phoning up and apologising profusely and begging for a new appointment, because my tooth really does hurt. We are funny things, we humans.

There are also actions and strategies that can hep with this problem, and individual hospitals and practices have reduced the problem significantly. Texts and emails reminding the patient on the morning of the appointment dramatically alter this one in ten figure, at a fraction of the cost.

Given that this is a behaviour that directly responds to state and institutional action, how much response does this issue get? 337,000 hits on google. there is no hashtag specifically for missed NHS appointments. No specific government strategies have been proposed, and this despite the vile attack on the NHS ongoing. One would think they would look for any opportunity to suggest an inefficiency. But then again, the problem is just as prevalent in private medical practice so it couldn’t really be used for an anti-NHS agenda.

Absenteeism due to workplace stress and bullying

Every year, the economy looses many, many billions due to both workplace absenteeism (taking sick days) and workplace presenteeism (turning up when you are too unwell to work). In fact, presenteeism costs the economy one and a half times what absenteeism costs. Looking at absenteeism figures, we find that approximately one quarter of all sick days are taken for mental health reasons. People can suffer stress and depression for a wide variety of reasons, but one main reason no employer should ignore, is where a persons stress, anxiety or depression are directly caused by their conditions of work.  Specific work place stress and mental health difficulties directly caused by workplace bullying  cost the economy an estimated one billion pounds back in 2008 in lost productivity, a figure that has been rising ever since.

Separately, lost days due to back problems for completely avoidable reasons such as poor quality office chairs cost almost as much.

This isn’t just a huge hit to the economy, it is completely avoidable. No one needs to be bullied at work. No one needs to be mistreated at work. Workers rights, a supportive environment for trade unions, and good legislation can also dramatically impact the rates of these problems.

Four things that all cost the economy one billion pounds a year. So, what might cost the same as those four things put together, and happen occur once every four years?

The World Cup

Another absenteeism issue, this time the world cup. Every four years some lads who should be big enough to know better dress in shorts and tea-shirts like little boys kick a football about and roll around in the mud, and for some bizzare reason ( I will never fully understand humanity) everyone stops to watch them! Sounds unbelievable, but take my word for it, it’s true.  And when this is going on, lots and lots of these people who stop to watch them phone in sick to work, so that they can stay at home and keep on watching them. And every time, once every four years, this costs the economy FOUR billion pounds in lost productivity, as work stops and people get paid to sit and watch some grown up kick an inflated pig’s bladder around a field.

In fact, the average man who actively supports a soccer team misses more days off work over the course of his working life than an average woman who has 2 children including all her maternity leave and carers leave. The difference is, the mother will take off blocks of leave, allowing her employer to organise cover and keep productivity up. The Monday /Friday  pattern of absenteeism which closely relates to patterns of alcohol consumption and the football season, has a profoundly greater impact on the economy while receiving a fraction of the attention of either disability or maternity in the popular mindset. Incidentally, employees with registered disabilities, while they may be slightly more prone to needing to take blocks of leave, are the least likely of all categories of workers to follow this most damaging Monday/Friday pattern of absenteeism, which has the greatest impact on the economy.

Disproportionate response

So, that’s four issues, each of which costs 1 billion, and another that costs 4 billion every four years. If concern with welfare fraud was actually about cost to the economy, then each of these five issues would receive equal treatment. However, that is far from the case.

For those who like visual information and tables, there  is a table below. What is shows is this. Each of these issues costs the economy  the same amount. One of those issues gets 10 times the internet response to the next most popular issue – that of workplace stress and bullying leading to absenteeism. its also worth pointing out that while benefit fraud is a victimless crime – the exchecker is hit by an infantismly small amount, no human being is hurt by it. Workplace bullying and stress however, destroy lives, destroy families and lead to terrible distress with long term consequences on both the mental and physical health of those who experience it. It is NOT a victimless crime. Real people suffer real tragedy as a result, so even if the economic impact were neutral (which it is not) it would still be reasonable to expect to find websites, facebook pages, hashtags etc dedicated to the issue. And yet, there are only a minute fraction of the amount that there are for benefit fraud. In other words, the internet gives benefit fraud 10 times the attention it deserves from that comparison alone. Meanwhile, if we look at the BBC web site, and search for each of these issues, looking specifically for ‘TV and Radio programmes’ on the topic, we find that, as of this date, BBC have 87 programmes available categorised as being about ‘benefit fraud’ and none on any of the other issues. (Previously, one documentary has been screened about copper wire theft, and others have popped up from time to time, but none can be searched for currently).

Behaviour

Election issue

Legislation

Google hits

BBC TV and Radio programmes

Benefit fraud

Yes

Yes

 24,000,000

 87

Copper theft

No

Yes

 143,000

 0

Missed appointments

No

No

 377,000

 0

Workplace stress absenteeism

No

No

 3,880,000

 0

World Cup absenteeism

No

No

 2,170,000

 0

In summary: the attention being paid to benefit fraud is nothing to do with the economic cost of the issue. The attention it is being paid is wildly disproportionate. The swindle is not the tiny issue of benefit fraud, but rather the whipping up of an entire population into a moral panic over nothing.

But at least two significant questions remain. What is the human side of all these figures. What kind of people are actually prosecuted for benefit fraud, and what impact is the moral panic having on the rest of us? To be answered in parts two and three

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The bedroom tax and buggy bound babies. Why it is wrong for all of us

The case against the bedroom tax has been well laid out by many. It has also created a large amount of heat. As of this morning, if you Google ‘bedroom tax’ you get one hundred and twenty three million hits. The key reason it is an evil, pernicious policy is simple, and oft repeated. As for example, in today’s Independent. There are not enough smaller homes for people to move into. Therefore, what the bedroom tax is actually about is driving ‘undesirables’, the disabled, older women who have raised their families and have no obvious ‘economic’ role for society, those on welfare, etc. out of council housing completely, and into precarious private renting, hostels, and rough sleeping.  This is, of course, the primary reason to oppose the policy, and it has also been said many millions of times already. What I wanted to explore today are some of the other, deeper consequences.

  • In the UK we already live in the smallest homes in Europe
  • Small homes are unhealthy homes
  • Small homes are actively disabling
  • Small homes are bad for children
  • Attachment to place, and a place to call home, is a fundamental human need
  • Membership of a community is equally a fundamental human need.

The bedroom tax will make the UK a sicker, more disabled society. It will stunt children’s growth. It will reduce the life expectancy of the sick, the disabled and the elderly. It will tear away whole strata of community support. And ultimately, so poorly though out is it, it will profoundly damage capitalism itself, reducing the pool of drones available for mindless jobs.

 

UK homes are already tiny

The ‘bedroom tax’ policy would have us believe that there are people out there living in huge big houses, and much of this space is unneeded. However, they do this by counting number of bedrooms, not actual usable floor-space. And the thing is, one person occupying a small 2-bed council flat in the UK probably has less real space than someone in Denmark living in a one-bed apartment. UK homes are already the smallest in Europe, and getting smaller.  Further, the loss of size is, not surprisingly, not universally spread. Social housing and private rented accommodation, on average, is just over half the average size of ‘typical stock‘ with less than 50 square meters per flat regardless of the number of bedrooms. So those sitting in owner-occupied 3 bed houses judging another person for living in a three bed council flat are simply not comparing like with like in the first place.

Most council flats are already pokey little boxes

Small homes are very bad for our physical and mental health

The two sisters detailed in this story describe quite well the strain of living in cramped living quarters. Small houses and flats are correlated with poorer mental health. Lack of sunlight so common to tiny one and two bedroom flats, combined with the innate stress of tiny living quarters can tip many people over the edge into a clinical depression they would not have suffered from otherwise.

Poor quality housing equally leads to poorer physical health outcomes. It’s been known for centuries that overcrowding leads to spread of infectious diseases. Globally, the World Health Organisation tell us that “Bad housing and poor environmental conditions have the greatest impact on acute respiratory infections and diarrhoeal diseases. And children are worst affected – accounting for as much as two-thirds of all preventable ill-health due to environmental conditions“. The same is just as true on a local level. It is also specifically linked to the new western world issue of the re-emergence of TB, with new, anti-biotic resistant strains. Shove families out of three bed houses into smaller, two bed flats, and you are greatly increasing the incidence of communicable diseases as they will spread much more rapidly between those that share bedrooms than those that don’t.

In short, the smaller the home you live in, the greater your statistical chances of getting sick.

 

Impairments don’t disable people nearly as much as poor quality homes disable people

Disability is, in part, an interaction between a person and their environment. We can’t – and maybe shouldn’t, change the person, but we can change the environment. Research that was being conducted at the time of the launch of DLA (now under attack) found that, while as a very rough average it could be said that a disabled person needed up to 70% more income to have the identical standard of living as a non-disabled person, this figure varied wildly, and the biggest single variable was not the severity of the impairment, but the quality of the immediate environment, specifically the home.(1) As an example, say a person looses the ability to get in and out of a bath by themselves. If they live in a home with a walk-in shower, it’s not a big issue. If they live in a house with only an old bath tub, they need a carer to come and help them, at incredible cost, while being actively disabled by what would otherwise be possibly quite a mild impairment.

The fact is, disability creates a need for space, and for adaptions to the home. The UK housing policy used to acknowledge this, and has subsequently and silently ceased to do so. Which meant that, when the bedroom tax hit over sixty percent of families affected have a disabled member, and one out of every four disabled people in the country are being affected. Most of these people are being driven out of adapted homes where they can manage their impairments, into non-adapted homes where they will become far sicker, and more disabled. This is not a neutral tax. This is part of the greater war being waged by the ConDems against the disabled.

The results of the Bedroom Tax will therefore be a dramatic  increase in the level of disability experienced.

Buggy bound babies and the consequences for childhood

Several years ago, I ran a Family Center in a large, highly disadvantaged area comprised of miles of high rise council flats and not much else. Among myself and the other professionals who worked in this area, a term came into common usage. One which, interestingly enough, I have found no evidence of being used beyond that specific area although I still personally believe it is a much wider problem. We talked about ‘Buggy Bound Baby Syndrome’. ‘Buggy Bound Babies’ was the short hand we used to describe a recurrent, almost universal problem that we met. It described children who, despite loving and caring parenting by their caregivers, and an absence of any medical ‘anomaly’, consistently failed to thrive, or meet any of their developmental milestones within anything close to the normal range. ‘Buggy Bound Baby Syndrome’ could be seen to affect almost every single child under 3 in some of the more dilapidated and deprived of the tower blocks.’Buggy Bound Baby Syndrome’, in the minds of myself and the other ‘do-gooders’ working in the area, also had a simple and clear explanation. These were babies who spent their nights in their cots, and their days in there buggies. They didn’t learn to roll over at the ‘right’ age, or crawl at the ‘right’ age, or walk at the ‘right’ age. Because they couldn’t! because insufficient floor space existed in their tiny pokey flats, so they were never put down to play on the floor. While less dramatic, these ‘buggy bound babies’ often showed a slowed development in speech and social skills, which is not surprising – if you hold back a child’s development in one area it will have knock on effects, and slow their development in other areas.

Buggy bound babies grow into sofa bound children. Children who do poorly at school because our education system, unlike most European countries, relies heavily on the concept of ‘homework’, and many children in the UK today grow up in homes so tiny that a small little study desk is impossible, never mind a big dinning-room table where they could sit and do homework properly with siblings and some parental supervision. A major part of our services used to be the provision of ‘homework clubs’ where the children could come, because it was that, or sit cross-legged on a bed in an utterly unsuitable environment with distractions at every turn.

From the time of Piaget, experts in child development have always stressed that children need space to play, both indoors and probably more importantly, outdoors. Furthermore, children need time and space away from adult supervision, to play freely and explore, or vitally important aspects of independence and personality formation can not take place. In a nice ‘middle class’ home the kids can go and lay out their toy cars in the bedroom while Mum and/or Dad do something else, elsewhere in the house.  The kids are ‘just playing’ – they are also learning about social skills, problem solving, physical skills, the list of what they are really doing is actually endless, and all of that is stolen from couch bound children who then do not get the same range of physical, psychological, social and moral development.

How will these children grow up to be happy healthy functional adults, with a positive space in society? More likely they will end up caught up in a cycle of diagnosis and pathologising. But we  call it ADHD today, and drug it away with ritalin, because the poor kids have not had opportunity’s to learn self regulation or so many other skills We don’t remedy that, we drug it away.

When will this be addressed? When capitalism runs out of worker-drones? Or will we just find more and more drugs to stupefy the unhappy with? Surely in the long run, it would be not only kinder and more helpful, but indeed more cost effective to accept that families require space.

A home is the place that we are from, the place that we return to, our refuge from the world

A home is far more than bricks and mortar. A home is a deep and innate psychological need. I know. I have had 27 addresses in my 40 years of life, and felt that need grow and grow. A home is a place where the marks still show on the side of the wardrobe door of the children’s heights at different ages, marked in pencil for each birthday. A home is a place where the hydrangea bush at the end of the garden marks the burial site of Rover, the beloved family dog who gave 17 years of loyalty and love. A home is a place you can plant a few daffodils, and paint the walls. It sounds such a small thing, to plant a few daffodils, but to the many women I worked with in that old, disadvantaged housing estate it was not. The area was being ‘regenerated’. The old tower blocks knocked down, and smaller (much much smaller) little maisonettes built in their place, as if this would solve the mammoth structural disadvantage faced by that community. The regeneration was supposed to be a ‘good’ thing, but caused some deep psychological issues for those experiencing it. In the young mothers group that I ran, I found that every woman had been homeless with her baby prior to an allocation of housing, and the uncertainly of knowing that she would have to move, but not know when, or how, or to where, re-opened many half healed wounds, and was actually quite a devastating psychological insult to these brave and wonderful women who had known far more than their share of suffering already. In the midst of huge problems, feeding their families and keeping body a soul together, this complaint, ‘I can’t even plant a few daffodils’ came up over and over again. We all need a home, a place to go out into the world from, a place to plant a few daffodils. The fact that this aspect, this psychological importance of The Home is so under discussed is tragic, and demonstrates how even we, on the left,  have got suckered so deeply into arguments of austerity – we could just imagine the response f the Daily Mail readers, so we don’t even say it. But it needs to be said – it is anti woman and anti family in particular not to say it. We have seen that, after the 60% of disabled people, those most affected have been women. Women such as Stephanie Bottrill and  Irene Lockett who raised a family in a family home. With the children gone, are now told to get out too, for as a society we value only those things that have economic worth, and value not at all those things with psychological worth, such as love, and compassion, and memories, and the ethereal qualities of home. The psychological impacts of this, as we can see, are devastating.

 

Personally, I live in a nice little 2 bed bungalow that I rent with my nice little academic salary and am not impacted by the bedroom tax. But as a disabled person, I must oppose it for being first and foremost an assault on the rights of disabled people. As a feminist, a woman and a mother, I must oppose it for being profoundly anti-family. As a lesbian I must oppose it for the same reasons. For how any anyone with any kind of non-conventional family have their right to family life respected, if even those with ‘conventional’ families are being trodden on?  As a human being, I must oppose the bedroom tax. And I must oppose it, for it is clear to see, if we allow society to be that damaged. we will ALL suffer in the end.

 

What we need instead is a massive building programme. We need homes. People need places to live. And there are just not enough. We need decent sized and decent quality life-time homes which will allow for families to form, and grow, and shrink, and grow in that age old pattern that families do. And if we did that, you know what? The investment would go a lot way to speeding up the economy again and help bring the recession to an end. Just ask Keynes, or Beverage, or any of the architects of the post-war welfare state.

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On the ridiculous suggestion that Stephen Hawking exists, therefore disability benifits shouldn’t

This week the Daily Mail and the Telegraph both ran versions of the same story, highlighting a rant by one particular GP in the doctors magazine Pulse. This particular GP resents spending time with patients who claim sickness benefits or require any support with their claims. Apparently, he expressed the desire to post a picture of Stephen Hawking, with the slogan ‘This bloke is not on the sick’. The argument, on the face of things, appears so utterly fraudulent that it requires no energy or response. However (and I find this no coincidence) it also follows hot on the heals, in the same week as the news poured in about the governments patronizing and exclusionary Disability Employment Conference from which platform endless ‘inspirational’ stories were churned out about specific disabled people who happened to have high-powered jobs, and the very loud clear message that if they could do it, so could everyone else. There was, of course, no mention anywhere within that conference, that what really explains what employment options are open to any person – disabled or able-bodied, are a function of social class, and more than anything else, this conference represented a class war, the lambasting of many working class people with massive barriers with fraudulent comparisons to those with sufficient capital to purchase access for themselves to the world of work.

This notion, that one disabled person represents all disabled people, and if one disabled person works, so should everyone else in the ‘same’ boat is a toxic, regressive notion. It assumes that all people sharing the same impairment are identical, and utterly fails to acknowledge the social origins of the barriers that are faced by disabled people. Disabled people are not disabled in isolation. They are disabled by society. A society driven by race, class, gender and sexuality divisions as well as disabled/able-bodied ones.

To begin: who is Hawking?

Stephen Hawking is, very significantly, an exceptionally wealthy man. He is also 71 years old. If we begin with the statement that Hawking is disabled and still economically active, therefore no other disabled person needs to be financially dependent on the state, then we ALSO need to say that Hawking is over retirement age and still economically active, therefore there should be no such thing as the old age pension. Sadly, as daft as such a statement would seem to most of us, I fear that there may be one or two Torys who wouldn’t disagree.

A Wikipedia biography of Hawkings shows that he came from a significant degree of privileged. At a time when only a tiny minority of people entered university at all, both Hawking’s parents were graduates of Oxford, placing them squarely in the very upper middle classes – despite the rigors of the second world war disrupting his early family life, and some (relative) financial hardships, Hawking grew up with a level of social and cultural capital that only the top one or two percent of the society of his time would have access to.

He was also able-bodied throughout his childhood and teenage years and had earned a 1st class honors degree from Oxford himself, before any signs of trouble on the horizon. The very early symptoms of his emerging disability began during the first year of his doctoral studies. At a time when he believed that he had a fatal illness, and was experiencing some clumsiness, gait disturbances (but was still walking) and slightly slurred speech (but was still talking), Hawking’s doctors advised him to continue with his studies as long as he could, but Hawking himself fell into a depression and felt there was little point in doing so. A combination of privileged family and a more kindly and sympathetic welfare state would have no doubt supported Hawking through this bleak time. (Importantly, an adjustment time allowed to Hawkings, but one that is nt being allowed to people developing disabilities today)

Hawking had contracted Motor Neuron Disease, a condition that normally kills within a matter of a couple of years, but Hawking did not follow the expected prognosis – it took several years before he needed to walk with crutches, and at this point, he also gave up his full time lecturing, and did not, in fact, therefore ‘work’ in a conventional sense from years before he even needed a wheelchair. The role of researcher as undertaken by Hawking, combined with also being a popular author writing for a non-scientific community is as unique, and unobtainable for the average person, as living with, rather than dying of, motor neuron disease is for the average person. During this time, Hawking also had the constant support of his wife, and also had a carer living permanently with them, so that he was enabled to work solely on his physics, and took no part in the labour of running the home or family. Hawking also coped by detaching himself from his disability and while he was engaged in a small number of local campaigns,  for issues such as ramps into buildings that he himself used, he rejected the role of disability campaigner, and chose not to identify with this disabled community. Based on his research and popular writings, Hawkings was appointed to a particularly prestigious position, the Lucasian Professor of Mathematics, at Cambridge.

The book that made Hawking internationally famous, and a multimillionaire, ‘A Brief History of Time’ was completed in 1984. This coincided with a life-threatening health crisis, and the emergence of the Stephen Hawking of popular image today. Receiving an emergency tracheotomy, Hawking lost all ability to speak, and had a voice synthesizer developed for him by his brother in law. (how many disabled people have a brother in law that can develop new technologies to help them adapt?)

Launching his book, Hawking was in no way held back by his dramatic disabilities. Many years of popular media tropes of the Genius Cripple  can only have helped. Television story-telling has always pitted the normal intelligence buff super-strong hero against the evil genius wheelchair using or blind super-villan and concepts of the genius cripple have been such a strong part of our popular media culture for so long, that the media had little difficulty using Hawking’s disabilities as a cultural proof of his genius, and why everyone should buy his books.

Hawking’s story IS inspirational in many ways. What he has achieved has been astounding, and we can learn many things from him. Mainly about the structure of the universe, and much less so about the experience of disability. For Hawkings experience only tells us about what is it like to be disabled, and a white, heterosexual, married, wealthy, genius male.

A young, black, lesbian disabled woman who grew up in care, even if she was an equal genius, is never going to walk into a degree in Oxford, nor walk out with a 1st so easily. She will lack the cultural and social capital to enable her to do so. She is unlikely to have a wife to stick by her and run the home and co-ordinate all care so that she can focus exclusively on her writing, and she is not going to be paraded across the TV screens as an obvious and expected example of what genius looks like. And if she is a young black disabled lesbian woman who grew up in care, and is merely of normal-high  intelligence, as opposed to a once-in-a-generation genius … ?

Let’s talk about Social Class

There is a prevalent idea, often promoted by disabled communities more than any other group, that disability can happen to anyone. Why would you discriminate and be horrible to disabled people, when you could be in a horror car crash, or have a massive stroke tomorrow yourself? This particular trope is also shown here in this add by the Red Cross.

It begins: “I am the fire that leaves you homeless. A heart attack in aisle six. The prescription you cannot collect. I am the boiled sweet stuck in your child’s throat. The motorway pile-up that leaves you traumatised. The food shopping you cannot do. I am the reason you need a wheelchair. The flood that leaves you stranded. The empty house when you return from hospital.”

There is something rather spine-chilling about it, is there not? Not the heart attack that was anticipated because you had been becoming increasingly disabled and suffering from coronary artery disease for a while. But the heart attack in aisle six. Utterly unexpected. Without any warning or any advance clues. The young mother stopping by Sainsburrys on her way home from work, and picking up a pint of milk from the chiller and a loaf of bread from aisle six. Then whammo. Heart attack.

And then the final line… ‘I am a crisis, and I don’t care who you are’. Chilling. Yet ineffective. Ineffective, because most people don’t want to believe it and therefore reject the message for emotional reasons. But equally actually statistically untrue. Crisis does care who you are. Disability does care who you are. It’s got its own quota, and its quota of ‘have-nots’ is many, many times that of its quota of ‘haves’. The poorer you are, the more likely you are to be born with a disability, and the more likely you are to pick one up during your life. Recent research shows that this gap, predicted to narrow as time went by, is actually widening. You are also much more likely to become disabled if you are black than white, a woman than a man, and queer than straight. Needless to say, being already disabled or having a long term chronic health condition leaves you many times more likely to develop a second disability or chronic illness than a healthy and able-bodied person.

So, who makes up the majority of disabled people? Working class people do. And there are more specific pattern than that. The single largest group of claimants of disability benefits in the UK are working class men from the north of England over the age of 40 who worked in manual labour occupations for about 20 years. And then they get dodgy knees. Or a dodgy back. And can not work again. The second largest group is women with mental health difficulties. Which again is very closely correlated with issues of both race and class as well as gender.

 

 

Disability isn’t something that just happens. It is something that is done to you. Often by the labour market.

There are eleven ways to disable cookies. They don’t disable themselves. That’s what disabled means. To be stopped from working. If you disable the cookies on a web site you visit, you choose to stop them from working. By direct action. It can’t happen by itself. The relationship between disabled people and the labour market is a complex one. Yes, sometimes, for some of us, with enough privilidge to be able to enter skilled, meaningful work that is adaptable to our needs, flexible for rest periods and not physically challenging, work can be actively enabling in an other wise disabled life. But work for many can also be the cause of their disability.

People in manual employment develop wear and tear joint damage, cardiovascular difficulties and a host of other ailments in far greater numbers than anyone else. Middle class service professionals succumb to stress and develop auto immune diseases and  mental health difficulties in far greater numbers than other groups.

The manual labourer, that ‘typical’ disabled person, was disabled by his work in the first place. The woman with mental health issues was very likely bullied for years in a job that chewed her up and spat her out. Capitalism wins. Profit is made. Disabled people are the by-product. For those (and they are the minority of disabled people) that have no statistical link between their current/former occupation and the disability they develop, capitalism is still making the decisions that disable them and sever their relationship with the means of production and consumption. What is the ‘normal’ working pattern? One that suits the ‘normal’ body only. What is the ‘normal’ house like? One that has stairs. How is a ‘normal’ classroom equipped? In a way that promotes conformity, labels and pathologizes ‘deviance’.

And finally, should our 45 year old brick layer with bad knees be forced off benefits and into destitution because Stephen Hawking is a public figure (who nonetheless probably still gets his DLA, etc)? Fuck that shit. Capitalism disabled him. It used him up and spat him out and wore out his knees until he spends every day in constant pain. His worth is more as a human being than simply a cog in a capitalist machine. Until we can find a way to re-write the capitalist system, the least we can do is allow him to claim his meager benefits with some dignity. Stephen Hawking has nothing to do with it. And the suggestion that Stephen Hawking has anything to do with it is a manipulative and deceitful act of class warfare.

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Do my students see me as disabled? And should they?

To what extent, I often ask myself, does having a disability affect my teaching?

Teaching is a relationship. One may be able to gather facts or alter habits in isolation, but without communication, one can never truly deepen understanding. Freire tells us that education must be based on discourse and conversation between learner and teacher/learner. Hooks goes slightly further. She speaks of the importance of authenticity in the classroom. A student can only learn if they are free to be themselves, to be who they are. To draw on their own wealth of experience, and reflect on that within the classroom. Whenever a student’s race, class, sexuality, gender,ability status etc are sanitised from the curriculum, or remain unspoken in the construction of class experience on a topic, a student is blocked from learning. Drawing on this, hooks challenges the educator to be authentic in the classroom. I read hooks, and find her challenge to be a challenge indeed. In my previous career as a practitioner, I found the only path to survival that of the ‘professional face’. I like to be the professional, competent, capable lecturer. And leave the frightened, in pain, broken me at home.

To be an authentic lecturer I need to allow the students some (appropriate) awareness of who I really am.  I tried the opposite. I was ‘in the closet’ for far too long. It led to the dual problem of inauthentic teaching and wild rumour. It failed spectacularly. When I name myself in the classroom space as a disabled, lesbian single mother it shapes how the students hear what I say, and allows them in turn to be who they are in the classroom without needing to keep secrets, or parts of themselves locked up in closets. It validates the students own sense of having experiences, whatever they may be, that count, and from which they can discuss and comprehend theory.

And still, day after day, incident after incident, I realise how quickly students forget that I have any disabilities. They do not see me as the cripple. They see me as the lecturer, as if those two things were mutually exclusive. Students are having a class discussion, and begin talking about ‘the disabled’ in a patronising way. ‘Can I remind you all that I am disabled too, that you are talking about me?’ I say form the top of the class. 30 students look at me in confusion. ‘You are not disabled’ they say. ‘You just have a bad leg, a bit of trouble walking’. The following week I am introducing some Forum Theatre activities to another class so I have all furniture stacked against the wall,and all the students in groups, playing games and moving about. As I move from group to group I trip, my 2 sticks fly away in front of me, and I slide across the floor. Only one student from the whole class responds. ‘Did you fall, or is this part of an exercise?’ she asks me. I laugh, and admit that I just fell. ‘Oh’ declares the student next to her. ‘I thought you just dropped your sticks so just stretched out across the floor to pick them up again’. The joy of leaving powerpoint aside and using forum theatre as a learning tool. Anything can happen. This is where lecturers ‘stretching out across the floor’ just doesn’t seem weird anymore. And these recurrent incidents make me laugh, and leave me feeling somewhat flattered. On the one hand, students can be so quick, in that learning relationship, to leave pre-conceived notions aside, and accept the slightly eccentric crippled queer lecturer for who she is. And intellectually I struggle with the thought that I shouldn’t feel flattered by the perception of me as non-disabled, but I do.

So, why exactly, do I feel more content at this regular discovery that the students do not the my otherwise all to visible disabilities? I currently don’t *look* disabled when I teach. This is important to me, for it is the only place in my life that I don’t look disabled. Every other place, space and time, with the possible exception of when I am sound asleep in bed, I look disabled. At the top of the classroom, sitting up on a desk, swinging my legs, is the one and only time, bar sleeping, that I have no disability aids anywhere near me, and no need of any.I fight hands that won’t work, legs that wobble, to get out of bed, to manage with simple self-care tasks in the home. Getting from my office to the loo and back can be a challenge. But there, at the top of the classroom, or even safely in my office chair with a student for a one to one tutorial, all that fades away. Teaching is my one non-disabled space in an otherwise very disabled life. This has great meaning for me. And so, am I in-authentically continuing to suppress something of myself when I teach? This is the dilemma I face. To want extent would the students benefit from more of an awareness that they had a lecturer who can’t walk, but who can still teach – and so I set myself up as that very thing I preach against – the (and how I hate this term) “role model”, – the one individual who looses individuality by being seen as representative of an entire peoples, and having moral lessons to convey about that entire group. Or, alternatively, to run from the categorization, resist the label, just me ‘me’, and by so doing leave swathes of preconceptions, misjudgments and prejudices unchallenged. And in turn, for the student with a disability in my classroom, what effect does this have on them?

 

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