Showing posts with label access to work. Show all posts

On working. And sleeping. Mostly sleeping..

These days, all I can think about is sleep. When can I go back to bed? How can I fit in a few more hours? The January dark and cold doesn't help, but even on a beautiful sunny morning like today, going back to bed is all I'm looking forward to. I've only been up 20 minutes. 

 I've been in work for about 10 months. I think. One of the most difficult challenges at the moment is that I can't think properly. That's fine when it just lasts for a couple of days; but this has been months. More months than I can count without losing track. I know it was October things started to really slide, but my brain won't function sufficiently to work out the months between then and now. 

 I did start picking up a bit. But then I went to London for work, the taxi I was travelling in hit a pothole and I ended up stuck in a London hotel room with spinal dislocations and whiplash. Then, well, it's winter. So I got a bug. Then a chest infection. Then the bug just didn't clear. Somewhere in all the middle of that it was Christmas and New Year. Apart from a brief few hours with family, they went pretty unremarked. Mostly because of the 'when can I sleep again' thing. Did I mention the sleep thing? 

 The narrative surrounding work is that its good for you, good for your health even. I'd like to believe that. I'm sure its true for many people. Work has definitely been good for my mental health. I absolutely love my job. Working with Gary Bourlet and the other self advocates we've supported is a pleasure and enormous privilege. It gets results too. One of Gary and Shaun's ideas was warmly received by the Employment Minister who is looking into possibilities of making it work. 

 So yes, the job is great. My colleagues are fantastic. I'm employed on an incredibly flexible set up. I can't imagine a better employer. In theory I have the freedom to work whenever I want, so long as I get my 16 hours a week done. And of course I don't have to do them all in the one week. But the convoluted tax credits vs means test benefits rules mean I can't reduce them to say, 10 hours a week. Then I'd have to go back onto ESA. And then apply for permitted work. Politicians talk alot about how Universal Credit will be the answer to all this. But then Universal Credit functions about as well as my spine. So I shan't hold my breath. 

 Which was all ok. But then it was summer and I had a bit more energy. And the upper spinal dislocations weren't quite as bad at that point. But they are now. Just holding my own head up is hard work. I've seen babies with better head control than I've got. And after months of failing to be able to find the right words, to not be able to write, or to even think coherently..they're sort of coming back. A bit. 

 And as it turned out, there are certain types of brain damage that go hand in hand with the kind of spinal trauma I'm regularly experiencing. So having wandered around muttering "I've got brain damage" for months might've been more accurate than I'd thought. 

 When I tell people how hard this is, how at the moment all that's keeping me going is the thought that if it all gets too bad I can go back on ESA, but that I really do love my job. They say that's sad. 

 But they don't really understand. Not any of the work is good for you people. How can anyone possibly understand what this is like without being in a similar situation. Or how, even with the most supportive employer in the world, how the pressure just increases as you fall further behind the tasks you need to do, but your brain just will not work sufficiently to order or achieve anything. My employers don't put any pressure on me. But its there. Inside me. And there is an election on the way. That sort of imposes another timetable on everything.

 Because we all want to believe that work is good for people. And in lots of cases it is. Apart from when it isn't. Even when I'm doing well and feeling ok, I'm managing work by not wasting spoons on anything else. Including washing and dressing. I am not convinced that is good for me. Its certainly not good for the people around me. But given I'm so exhausted I don't want to see, speak to or do anything, the dodgy smell is less of an issue than it could be. 

 There's alot of talk amongst disabled campaigners about moving from the Support Group to work. The holy grail for everyone is 'flexible working'. I know, I spent years believing that if I could just get the right job, with the right set up, then working would be possible. 

 And it sort of is. So long as I do absolutely nothing else in my life. So long as I use my 4 or so functional hours each day on nothing but work. This weekend, thinking I was getting better I went out for a few daytime hours. It was the first time since the London whiplash incident. The outside felt jarring, surreal. I went to a meeting, which if I'm honest was more work than not work, then went to bed. The next day I met an old friend for coffee. Then I went to bed. Then I started projectile vomiting. And it didn't stop. Splatter pattern ratings were assigned. As ever, when vomiting, the force pulled at my spine. All the good work my physio had done two days before was undone. 

 Spoonydoc has written this excellent piece in response to the current discussion about moving straight from the support group to full time work. It really is excellent, so do read it. But I can't remember the point I was trying to make anymore. I've been writing for 20 minutes or so, and awake for an hour. I'm so tired nothing will keep straight in my head. I need to go back to bed. But I also really do need to use some spoons on getting clean. The post vomit smell is bad enough for a day. Beyond that, its beyond rank. 

 But showering takes energy. Energy I simply don't have. 

 What I need is just to turn everything off. For months. To sleep as much as I need, to focus on the routine of getting washed. At least more days than not getting washed. To eat well, to spend time on physio. To try and find some form of exercises that will assist my feckless, workshy neck muscles to remember why they exist and hold my bloody head up for me. 

 But that's the key difference between paid work and being on an incapacity type benefit. Even if you're doing lots of voluntary work..voluntary is just that. When you need to focus on your health more than anything for an undefined period...well, you can. You have an income to allow you to do so. Sure, its not much, but unless you've also got an enormous debt, it is usually enough to keep a roof over your head, have enough to eat and pay the bills. 

 Other people tell me this is really sad. I already know that. I live it. I live with the sadness of never having the energy to do anything. Of knowing that I'm constantly irritable and unpleasant to be around. With the fear that what I'm doing to my body will ultimately result in a spinal dislocation so severe the cognitive impairments it causes will never go. That the voice loss won't come back. Oh and the quadriplegia risk. 

 I love my job. I quite like working really. Or I think I do when I'm not so exhausted. I certainly love the work Gary and I do. I must do. I don't do anything else. 

 But please, don't make the mistake of thinking that this is easy. Or that work really is good for everyone's health, we just need to think of work differently. Because frankly, that just isn't reality for some of us. 

 There was probably meant to be some sort of concluding thought to this. But I can't remember it. And I need to go back to bed. 

Brown Envelopes & Bureaucratic Bullshit (Journey to work, Part 2)

Two DWP envelopes in the past two days. Nearly gave me a heart attack when I spotted them. The first was what used to be a standard 'rates of benefits will change' letter - but the language and order of information is both intimidating and confusing. It wasn't until I got to page 3 that I realised I didn't have to follow the 'mandatory reconsideration' process outlined on page 1; in fact I don't have to do anything. Good job I've got an LLB/Hons, its only three years training in how to read legalese nonsense that has equipped me to occasionally be able to translate DWP speak.

The second letter was better news - my equipment will be funded by Access to Work. Which is great. Even the expensive bits of it I explained I was highly likely to be unable to use. 'Just try it out' is good advice, apart from the bit where what you're trying out costs hundreds of pounds, isn't the answer and is really being imposed instead of providing support worker support.

As for when I'll know about support worker hours, your guess is as good as mine. The battle over the 20% limit continues. All the guidance read by myself and other disabled people leads us to the same conclusion - the 20% limit is being applied incorrectly. The consistency in the incorrect application by advisors in different locations leads me to speculate that the advisors have been trained to provide the incorrect application, perhaps to limit the costs of Access to Work despite its financial return for the Treasury. Oh, and that small matter of 3.5 years of 'work is always best' rhetoric..

Ah well, my employer and I have only been waiting for this since early January. What's another few weeks when you're waiting to come off benefits and start work?!

The 'Scrounging Scum' to 'hard working, tax credit claiming, socially acceptable scrounging' journey

First published on Disability Now - AtW: Denying Access to Work


With government rhetoric stressing their keenness to get more disabled people into work you might think that their scheme to support disabled people in employment would be an example of well-oiled machinery.
But when, having got a job, Kaliya Franklin set about getting the support she needs, what she encountered was a confused tangle of red tape and bureaucracy.
I’m very, very lucky to have a potential job with an employer who is willing to bend over backwards to accommodate my fluctuating and unstable condition. Work from home? No problem. Work from bed? No problem either. it’s like the holy grail for people with a fluctuating condition.
Naively we thought that Access To work (ATW) would be a rapid, streamlined process providing all the support we would need to make this unusual employment situation workable.
Access to work is one of the few major success stories in relation to government spending – for each £1 spent by ATW, the treasury gets back £1.48 in income tax and national insurance. It has also been described as the DWP’s best kept secret. Employees and employers like the scheme, but given that the number of ‘new starts’ has been falling since 2010, is Access to work actually helping people to access work?
ATW is intended to provide the support an individual needs to carry out their job, whether that support be in the form of equipment, accessible transport or a support worker. Recently there have been various changes to the provisions ATW can make and in what circumstances. With classic timing, I applied for support just as these changes were taking effect. I wanted to be sure my  package was in place and would provide the support I needed before starting work.
That was a wiser decision than I realised – it took 4 weeks for the ‘equipment assessment’ to happen and now, some 5 weeks on from applying  I have yet to hear what equipment I’ll be granted and whether I have managed to fit within the strange and complex flow chart now used by ATW staff to decide whether someone is allowed support worker hours. Funnily enough, I’ve also yet to start work. Oh, and I can’t tell my employer when I might be starting because I don’t know when ATW will be set up…the best I have is a vague ‘if you haven’t heard in another 10 days call us’.
So far my experience has been disheartening and stressful as well as confusing. ATW is working to updated DWP guidance which limits both the equipment they now provide and introduces a 20% limit to the amount of support worker hours permitted. Each advisor I’ve spoken to at Atw has been consistent in their advice – I can only have a maximum allowance of 20% of my hours worked in support worker hours. However, when I finally managed to track down that official guidance I found the advice given to me by multiple staff members to be wrong. The support I need falls into the category of ‘life skills’ – this means access skills to enable me to carry out a whole task – things like someone to scan documents for me, take me to the post office, or support me when I have to attend meetings elsewhere. The support worker won’t be doing my job, I will, but without that support I may not be able to carry out the job. The official guidance is clear – ‘life skills’ are an enabling support which is a conduit to being able to do the job, and the funding is supposed to be available for as much of this support as an employee needs.
So, not only am I still waiting to hear what equipment I may receive, but also to find out if I can have the 20% proportion of hours worked in support worker hours, even though this is in direct contradiction to the official written guidance.
I mentioned I was lucky to have an understanding employer committed to making the adjustments I need. With a 5 week delay in starting work, and no idea when the actual support offered might be in place, let alone whether that support will be sufficient, it really is fortunate. I can’t imagine a supermarket waiting for someone to start a shelf stacking role would be quite so flexible. Why would they be when there are hundreds of candidates for every job who are able to start immediately?
As for me, I’m 5 weeks into the process and far more disheartened than when I started. It’s impossible to plan properly without knowing what and how much support I’m entitled to. It’s impossible to start work without that entitlement. So, I’m still on benefits. Not in the job that’s mine. I’m far less confident about succeeding in employment than I was to begin with. Access to work should be the stable part of my support, not an additional challenge and barrier to employment.

Deputy Speaker's Internship - Day 2

Day 2 started much as day 1 did - early morning whimpering, a cup of tea with a chaser of oramorph in the hope that it would reduce the pain enough so that my feeble whimperings when I sat down weren't audible to others. It may or may not have done the pain trick, but it did at least make the scoot across the bridge to the House of Commons much more 'ooh pretty' and the battle with the supposedly automatic wheelchair doors another nice man had to wrench open much funnier. I'm not sure what poor Alex made of my mumbling about morphine as I arrrived, as at this point in the experience I hadn't yet realised he knew absolutely nothing about my condition and had been told not to ask.

We started the day more formally with a cup of tea and discussion in the office, then we went off to observe a Work and Pensions Select Committee evidence hearing of user experiences of the work programme. That was a somewhat misleading title, as although there was lots of talking about experiences, there weren't any actual people who might have used the work programme present...just people who's job it is to somehow comment as though they are users of the work programme. It was very exciting to be in the actual room having watched so many of these hearings online, and hilariously weird to be tweeted by my friends suggesting if I just moved one seat along they would be able to see me on the live feed.

I would have liked to stay and see the whole evidence session - there were some very interesting points being made about the complete lack of information for employers or work programme providers in relation to disability - ironically some of the same issues Alex had experienced when he was working to put the intern programme together for the week. The particular scandal was that there was no point of contact for providers or potential employers to be given information about reasonable adjustments, how to help support people or even to speak to Access to Work. It's no wonder the work programme is less effective than not making any interventions, what on earth is the point of throwing endless money at something when its actual design prevents it from working?

However, all too soon we had to leave and to something even more exciting than a work and pensions select committee (yes, I really must work on the getting a life thing!) This was a wednesday, and so a PMQS day - the big draw of the week. Alex and all of Nigel Evan's team made huge efforts to get us tickets as they knew how excited we were about being able to watch that. To make it even more special we were able to go into the central lobby to watch the Speaker's Procession just prior to PMQ's and then were in the house for the feistiest, funniest PMQ's I've seen in a while. It is overwhelmingly loud in there and MP's of all parties are astonishingly badly behaved.

Then it was straight off to a grassroots football event sponsored by McDonalds. I was deeply disappointed that Big Mac's were not on the menu! Fortunately I'd mentioned my utter ignorance of all things football prior to going into the event, so when the nice, smiley man came up to us to say hello, Alex introduced him by name and explanation - it was Sir Geoff Hurst (who, for those as ignorant of football as me, apparently scored goals in the 66 World Cup) We had a chat about my 'swizzy pushchair' which he immediately apologised for calling a pushchair and explained he gets muddled up, partly because he's got young grandchildren, and partly because he spent alot of time pushing his daughter in her wheelchair when she was poorly. I explained that my Dad sometimes calls it a pushchair too, and that as he actually did push me in a pushchair that its an understandable dad mistake to make! I was sorry to hear that Sir Geoff's daughter had died, and we had a little hand hold empathy moment in the middle of the football reception.

If you're looking for football details from the reception...I don't have any sorry! But we did also meet some man called Pat who was quite handsome and apparently used to be good at football too, and there was a fascinating, inspiring woman speaking who was a volunteer football coach in addition to being a policewoman.

We finally managed to get some lunch at about 2.30pm in another of the subsidised restaurants, but for me the day was a real struggle and I'd had to duck out of the football reception briefly to take more oramorph.

The last event of the day was observing a debate on the privatisation of the probation service - it didn't last long as the division bell rang and all the MP's went off to vote, but the most interesting bit was how many of the issues relating to the failure of the work programme came up in relation to probation services, especially as the criminal justice and probation services spend so much time with people with mental health problems or learning disabilities. It showed very clearly that whatever the rights or wrongs of privatising probation, there isn't any point doing anything to it unless we have effective back to work support which can cater for a huge range of barriers.

I was really struggling with pain and fatigue so after we'd finished and I got to go and meet fellow campaigner Jane Young for the first time, its no wonder she was horrified by how pale I was! But, it was still a fantastic day and great to be able to talk it through with friends for a few hours afterwards.

Photo shows Sir Geoff Hurst, a white man in a dark suit with a red tie leaning on a lectern as he gives his speech on grassroots football

What is Work Experience?

Of late, there is much talk of work experience - what makes it experience, how can people do more of it, is it slavery, oh all kinds of questions that for something, back in my day used to be quite simple. A few months before the highly anticipated 'work experience week' which, however dire, had to be better than a week of lessons, you'd fill in a form expressing preferences as to what areas of the work world you might be interested in, then hope for the best and forget about it until closer to the time. I got lucky once and had a fantastic placement, and on another occasion remember sitting in a post room for a week not being allowed to actually do anything. Them's the breaks, even then back when it didn't require either an independent income or DWP imposed sanctions to be able to carry out work experience.

So, when the idea was suggested that I might like to do work experience in the Deputy Speaker's Office I was quite excited and hopeful of more than just a post room holiday. It took everyone involved a few months to set up, in between available dates, illness and wondering just how to fund the whole thing, but eventually we settled on early March, hoping the weather and therefore my symptoms would be a bit better. The weather lived up to traditional British expectations and was f r e e z i n g, but apart from that the week was fantastic, exhausting and exciting.

Being based in the north west I couldn't take up the opportunity of an internship without being able to fund accomodation - which meant for a few days work experience I needed to raise well over £500 to cope with London prices. Fortunately I was able to find a charity to help, so I only needed to cover the costs of transport and food - having several months lead in time meant I could save up for the ticket and food wasn't too terribly expensive as lunch was provided for us each day. Without the charity support I wouldn't have been able to do any of this, and despite asking around charities and work programme providers about funding to do work experience no-one could think of any, so this fantastic opportunity simply isn't open to sick or disabled people who live outside easy commuting distance of Westminster, unless they have independent wealth.

The experience, or mini internship as it was properly titled, was organised for us by DWP Ministers, and a timetable was set out from 10 am until 4pm each day as one of the participants might have fretted a bit about where nap times fitted in to the whole thing. As it turned out, unsurprisingly, naptimes did not fit with the programme, but 10 - 4 was just about sort of manageable, although there were consequences as a result. And I do apologise to the hard working House of Commons cleaner's for the various sticky patches of oramorph residue I left about the place...and the multiple doorways that didn't move when I asked them nicely to. Oh, and the really expensive automatic door that erm, needed fixing after I tried to open it. However, having learnt my lesson about liquids and Westminster, I oh so carefully refused to actually drink anything in the receptions they went to as I've noticed it stresses the domesitc staff out quite a bit when said liquids get flung everywhere. There was a definite, don't worry about dropping stuff, attitude from the political staff though.

Our first morning was so cold, so, so cold that I was visibly vibrating when I arrived at security to be greeted by a broken wheelchair doorway. I suspect the looking like I was going to fall off my scooter helped them rush me in, but the automatic doors refused to co-operate and one nice security man had to fight his way into the bit I was stuck in and wrench the doors apart. On a side note, it is potentially concerning when the security guards remember you between visits that are some months apart. However, this set the tone for the whole 3 days, I'd arrive, we'd all celebrate the wheelchair doorway being fixed, scratch our heads then wait for the nice man to come along and use brute force to open them.

Access at Westminster is an interesting business - generally speaking I think it is quite good, using a base line level of 'is there any access, and can you get to where you want?' however it does involve lots of longer routes, going outside, having to observe from separate areas, and much more time allowed to get anywhere. The teeny tiny lifts won't all fit even a small wheelchair or scooter, and it was sad to see the empty stools in them where just a few weeks ago men had full time paid employment. We only got lost a few times, and one particular 'where are we' moment came with a flurry of black tie'd waiters who let us pinch canapes off their plates.

I noticed that not many people in Westminster notice the real people who work there - the cleaners, the security guards, the waiting staff, everyone who is actually important in terms of keeping the place going is invisible to those who think they are important in keeping the place going. I was really saddened to learn that senior management staff are getting a pay rise of between 4-5% but the important, front line staff are getting the same 1% as other public sector workers, with a side order of re-negotiated contracts to reduce their employment and pension rights. No wonder they are planning to strike. It was also depressing, but unsurprising to learn that the chief clerk of the House of Commons is given a grace and favour mansion as part of his job, not like for example the Speaker's residence which is used frequently to host events, the clerk can do that if they wish, but doesn't really. However, to compensate the clerk for the sheer inconvenience of having to live in a grace and favour mansion worth millions, he is given 7% of the value of the grace and favour property in addition to his salary. This is all information in the public domain but as the chief clerk isn't a political position the media don't seem to care. I bet all the cold, homeless people would care if they knew though, the hard working Common's staff watching their management give themselves payrises certainly cared!

From the perspective of disability and access, I think its safe to say the Deputy Speaker and his team learnt more than their interns. We were looked after by the very lovely Alex, who like most young, ambitious Westminster staffers hadn't much in the way of prior disability experience, so, sensibly he'd phoned up the Diversity Office to ask for some advice before we arrived. They, not terribly helpfully managed to drum into him that he must not, under any circumstances EVER ask 'what was wrong' but merely ask 'what was needed'. Its the kind of social model advice that seems a great idea until reality crashes in and irritatingly reminds people that generally just a little bit more information than that is required. This meant I didn't realise until we were leaving on the final day that Alex hadn't a clue what was going on when I went a funny colour, muttered about needing morphine or went off to the loo to relocate another joint hoping the screaming was muffled by the thick Westminster walls.

The other intern was a young man with profound deafness, so we made quite the group as we went about - Paul needed two full time British Sign Language interpreters with him at all times, sometimes there were three, then there was me on the scooter and poor Alex trying not to lose or break any of us. This mostly succeeded until the final afternoon when for some reason the scooter tipped, I put a foot out to stop it falling, insisted I was fine, then two minutes later said that actually immediate access to a toilet and some morphine would be helpful. Now. Please.

The most important messages I got from this work experience were;

I'd like to go back and stay there forever. My body however was not so enthusiastic about this ambition and demanded copious amounts of opiates and three days before I could get out of bed and speak without slurring.

Westminster is a bubble. We all know that, but from the inside the bubble of priviledge is far more insulating than the outside could ever imagine. It's really no wonder that they are all utterly disconnected from reality, regardless of which party they belong to.

Its not just the work programmes the DWP have 'forgotten' to inform about minor details such as Access to Work. They haven't told other departments about it either, so no-one had any idea when setting this up where they could ask for advice, any access requirements or fund them.

In that bubble, if people insist they want things to happen, they happen. Its like magic to the important people...all those underpaid Common's house elves just wave a wand when the important's aren't there and Dobby style, their will be done. Its really no wonder that we have a political class who are utterly ignorant of the real world when they get a lesson in 'thy will be done Westminster style' without the reminder that the rest of the country simply doesn't work that way.

Politicians are really, really keen to get more disabled people to become MP's. Really keen. So much so they don't actually listen to what disabled people are saying the barriers actually are.

The key take home message I left with was that if I want to be an MP there are no barriers, there will be no glass ceiling, and whatever is needed in access terms would be done. It was actually really powerful to hear that message from the Deputy Speaker, and I won't forget what he said. But sadly, I think there's a long way to go before those same politicians understand that for many of us, all the access or equipment in the world cannot overcome the barriers our bodies present to working in terms of sickness, pain and fatigue. However, the more of us who spend time with politicians, the more likely they are to understand this.

My favourite fact about the House of Commons turned out to be toilet related...which won't shock any long time blog readers, but is also a weird little access feature, historical style. If you've ever wondered while watching PMQ's why the Speaker's chair has a roof on it, its because once upon a time it was also a toilet. The Speaker wasn't allowed to leave the House while it was sitting, so before there were Deputy Speaker's there was a curtain around the chair which the Speaker would pull shut, do his business, then open back up and carry on. Bringing that back would really liven up PMQ's!




Do You Know What You're Asking? #BADD

I remember it vividly. My last day at work. Well, I say last day at work, more accurately my last day trying to go to work. I was yet to be diagnosed with Ehlers Danlos Syndrome and very unsure whether I was actually ill or somehow doing it to myself as everyone around me believed. 'Just try a bit harder' was my mantra, acutely aware that the job I'd worked so hard to get was in jeopardy if I didn't manage to overcome my sickness absences.

So, like any other work day I hauled myself from bed, trying desperately to ignore the shaking and waves of nausea. Dressed, limped to the car and set off. Still feeling terrible as I drove I desperately attempted to use mind over matter and convince myself I was fine. Turning onto the motorway, pulling into the fast lane....so far so good.

Until, without any warning I threw up. Repeatedly. Forcefully. Still in the fast lane, still travelling 70 miles an hour. Except I was now dripping with vomit. Everywhere. My clothes were soaked, the inside of the windscreen was running, and the steering wheel was overflowing with puke.* I was so focused on reaching work that I carried on driving. Thinking somehow, someway I could sneak into the building, clean myself up and do my day's work without anyone noticing.

It took another junction and the cold, congealing vomit I was sitting in to bring me round to the concept that there was no way of hiding this. I was saturated and stinking, didn't have any spare clothes with me and even working in an isolated office knew I could not get through the day without someone attempting to track down the source of the foul smell.

In that moment, as I pulled off the motorway and turned around to go home and clean myself up that I knew. This was the end of my job. My employers had been as accomodating as they could through all the failures of access to work, even trying to provide some protection by 'medically suspending' me in the hope the equipment ordered by AtW would actually turn up and had given me more paid sick days than I'd managed to work. Astonishingly they were still willing to find some way of employing me, but I still knew. This was it.

Somehow, despite my not having worked long enough to be entitled to an unpaid sabbatical my employers managed to arrange it. I had 12 months, after which I'd be guaranteed a job at the same grade and same hours I was working when I left. Not my job to go back to, but it would be a job. 

A year later I had been diagnosed with EDS, but I was far from able to return to work. I'd done my best to try and learn to cope with my condition but I was too ill, both mentally and physically to stand a chance. Decades of mistreatment by disbelieving medical professionals meant I found it impossible to find a rheumatologist, pain management or physiotherapy. I had no way of knowing if I would ever have that kind of support and no way of returning to the workplace.

Eventually I started to find my way back to living. I found the confidence to join an online forum for others with Hypermobility EDS, a small, supportive community rich with emotional and practical advice. I was so ill I had to learn to walk and talk again. Alone, without any professional support. I was so weak when I started that I couldn't even tolerate a full minute sat on a wobble cushion. It took months of adding 30 seconds a day to the wobble cushion time before I could even consider the challenge of relearning to walk. It would be several years before the magical day I managed to make it the 50 meters or so to the corner shop and buy myself some chocolate. It took four years to build enough confidence to consider starting this blog.

After five years I started to dream about working again. At various times I tried New Deal for Disabled People and Pathways to Work. They would talk alot about CV's and two tick schemes, but when I asked about professional retraining or whether they had links to employers willing to employ home workers I would be directed to photocopied job adverts for jobs I was physically incapable of ever doing. So, I wrote, I managed my condition, I learned all I could about anatomy, physiology, physiotherapy, speech therapy and I worked at it. Every day.

I learnt I could manage my symptoms if I listened to my body. I learnt that I could be happy, happier in fact than many of my able bodied friends living the life of career, marry, babies that like every other middle class girl I was supposed to grow up to do. I learnt of my community, our history, our common challenges and our differences. I learnt that I could pay forward the support which had been offered to me by a community of strangers. That in doing so I could feel worthwhile, like I was making a difference and contributing to society. I learnt that I could survive the bureaucratic insanity of the NHS and welfare state. I learnt never, ever to trust welfare advice after months of receiving the incorrect benefits plunged me into debt. I learnt to learn the rules myself.

It started to feel as though there was light and hope. And then, the Coalition government were elected. I learnt that they intended to target sick and disabled people's vital support in a way more extensive than any of us could have dreamed. Along with a tiny minority of our community I learnt that this targetting was dreamed up by people with no concept of living without vast resources, no idea of the reality of life with chronic health problems or the huge, yawning chasms in the existing 'support' systems. I learnt that these decision makers were clueless, which made them callous and cruel. Cruel enough to even consider condemning some severly disabled people to their beds.

Over the next two years I learnt exactly what determined, angry and organised people can do. I learnt that those of us who've learnt how to pick ourselves up from the darkest of places, over and over again, will always find a way to do so again. I learnt a sense of fierce protectiveness for others in my community, for those more sick than I, for the children yet to join us, for those so utterly voiceless that being tortured is their daily experience.

I made new friends and learnt how powerful a bond people can form with each other through the commonality of exclusion. We learnt new skills, politics, strategy, PR, policy and precedent. We had all learnt that most basic of lessons; that its always worth a try. With this in mind we ran national campaigns, lobbied parliament and Peers, developed our own media, rationalised and reasoned. When we were ignored I learnt we could come together to produce our own evidence.

The Spartacus Report was born of desperation and tears. Speaking to Sue on the phone she mentioned we should probably pay more attention to the DLA reforms. I cried. And cried, and cried. With exhaustion and hopelessness. And so we agreed. The one with slightly better health than the other would lead, and the other donate brain time every day. And so we did. Others joined us, all of us working desperately, primarily from bed. We had no idea we were creating an entirely new form of protest, a 'from bed activism' or an entirely different, radical new way of working for sick and disabled people. We had no idea because we could barely get through each day.

Sue's in hospital now, being fed by tube and waiting for surgery. She's my friend so I don't want to think about how poorly she really is or what that might mean. It goes both ways, she doesn't like to think that about me either. Yesterday we talked on the phone and tried to remember last year. We recalled multiple courses of antibiotics for both of us. For me a plaster cast on my wrist, a serious fall from my wheelchair, the day my neck became so unstable I feared waking up a quadriplegic, the rotated vertebrae which still move around disconcertingly and of course the having not been able to speak properly since October. We remembered that there was much, much more we couldn't remember. We remembered the days of having to keep hanging up the phone as neither of us could get off the loo, of reaching a point that we wouldn't bother to hang up while one of us vomited, and the days one of us was so fearful the other might die that we'd just stay on the phone. In case. So there was someone to phone an ambulance.

Throughout all this we both tried to convince ourselves we were fine. That somehow, being in pyjamas, usually opiated more than halfway to oblivion while we worked couldn't damage our health. We worked harder at convincing ourselves of that than almost anything else. That, and that there would definitely, totally be some way, somehow from this that we'd be able to earn enough working from home to not have to rely on benefits. That we'd find an employer somewhere who wouldn't mind the sick. Or the poo. Or the medication. Or the occasional declarations of wanting to be a duck.

Unsurprisingly it hasn't ended brilliantly for either of us. 

Last night my larynx collapsed again and I choked. Alot. Unattractively, coughing and vomiting into a bucket brought to my bed. I'm staying with friends, at home I'd have coughed and vomited onto my bed and had no choice but to sleep in it. Here I get a bucket brought to me. That's spoonie luxury.

The thing is, I'm with friends in Birmingham so that I can go to Naidex. The idea was to go and look at wheelchairs, then meet up with other friends for lunch tomorrow. I planned it all very carefully. Drove here on Sunday, spent all of yesterday resting. But then there was the choking thing. And the definitely aspirating some of the vomit thing. Then the waking at 6am to do some full blown vomiting thing.

So, now it's gone 10am and I'm still here in my slightly sicky smelling pyjamas. There's definitely puke in my hair, so I can't go anywhere without washing that out. I also can't get it together enough to have a shower and wash my hair, let alone find the skills to control 2 tons of metal on the roads, so there won't be any wheelchairs for me today. Instead I'll stay here on the sofa, I'll try not to worry too much about my sick Suey in hospital, or any of my other poorly friends and force myself to focus upon the lessons learnt in the past nine years.

And I'll do my absolute best not to think today about the 40,000 sick and disabled people deemed fit to do some work at some point, with the right support, who lost their benefits yesterday. The people who've worked hard, paid tax and national insurance. The people with conditions like cancer, Parkinsons, MS or bi-polar. The people who's contributory Employment Support Allowance ended yesterday when the twelve month time limit was brought in to apply retrospectively. I'll try not to think of them, not to think of the potential problems to come when Personal Independence Payment comes in. I'll try not to think, with guilt of the nine years I've had to learn to adjust to living life with both disability and chronic ill health. I'll try not to think that even with all that experience, the ability to manage my symptoms, that reality just doesn't work that way. Try not to think of however hard I try, still being too sick and disabled to function.

I'll try not to think any of that, because if I do, all that will come is fear and tears.

And I'll try hardest of all not to think if politicians really know what they are asking sick and disabled people to do. I'll try not to think that, because the terrible, terrifying answer is that yes, they do. And that a ruthless, brutal form of Darwinism means they have every intention of doing it anyway. 




*Huge apologies to Hossylass, the next owner of that car, who is hearing the puke story for the first time and probably realising that it's the source of the crud it was impossible to clear out of the steering wheel! 


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