Monday, July 30, 2007
But despite the desire to write I was compelled to stay, drawn to the sun, like any reptile, basking, desperate to fully warm through it's body, thoughts of the long winter months unable ever to be entirely warm for now driven away by the heat of the rays caressing my skin, soothing my joints, easing loose my knotted muscles working over hard in their ever fruitless efforts to hold my body together.
I try to write longhand, to see a screen impossible in the bright light but more unable to face the gloom and chill of the room I spend most of my time a prisoner in, seeming so far away from the warmth of the healing rays. My hand can no longer grip the pen as my shoulder screams in pain from this level of effort so I swap to the other hand and try that for a couple of arduous sentences before becoming frustrated enough to see if I am able to write with my toes. I am but cannot control the pen enough to make anything out and so finally, for now, I concede defeat.
Friday, July 27, 2007
Wednesday, July 25, 2007
So why, why, why does this 29 year old man have to live in a place of someone else's choosing? Be given a bath at the time and day of someone else's choosing? Be forced into unemployment through the rules regulating the incredibly high cost of his already unsuitable living environment?
The short answer to me seems as usual fairly simple, and is the same answer time and time again. These rules have been designed by people completely and utterly ignorant of the realities of the workings of either the benefits or care system. People who with woefully few exceptions still blithely assume they know best. Civil servants, politicians, doctors, nurses, and always, always, always the worst offenders of all the social workers. Able bodied professionals who make decisions over other lives without even the most basic of understanding of how it is to live such a life.
Tuesday, July 24, 2007
Unsurprisingly the bullying did not stop, and I ended up with a serious nicotine addiction, marlboro reds being my drug of choice during my teens...I can still feel that initial burn in the back of my throat as I type this. What's more surprising is the pleasure that memory evokes even now, in contrast to the memory of my 14 year old self hidden away in a park, afraid of my friends, not wanting to smoke or even touch the cigarette but more afraid not to.
Monday, July 16, 2007
The plumber arrived and I made him a cup of tea before he turned the water off. I pootled around whilst he sorted the problem out and talked to me about his son and the problems he was having with his now ex girlfriend and their baby. It's the usual story I've heard so many times of being refused access despite paying out to support her and the child.
The toilet was fixed within half an hour, something to do with a diaphragm...though I'd thought that was a form of contraception. I asked him how much he wanted for the job and he said £9. I tried to give him £10 but he insisted on giving me back £2 and apologised for burdening me with all the stuff about his son and grandchild.
Increasingly I feel like I am living in some sort of parallel world.
Sunday, July 15, 2007
Wednesday, July 11, 2007
"Raymond Green took his mother to Market Harborough from Leicester on a low loading bus but could not get a wheelchair-friendly service back.
Mr Green said he was told by the bus driver there would be a wheelchair friendly bus running on their return journey.
"The experience has left us feeling angry," he said. "We were told there would be a low floor bus to take us back and when that didn't turn up we had to walk to the station."
"As a business we have to be sensible and decide where the priorities lie. We are constantly improving our services and constantly buying low floor buses but at £125,000 each it's not something we can do very quickly." "
Tuesday, July 10, 2007
The meeting had been arranged over the phone, and at the time I'd thought I was talking to the much older man I'd met at the jobs fair. So really I didn't think much of it when he was asking about places other than the job centre to meet in my local area and just said the job centre was fine for me. He mentioned a cafe several times which I thought a little strange but not dramatically so until I arrived at the meeting today and found it wasn't with the much older man I'd thought I was meeting but a guy around my kind of age. Odd, not massively so, just well, odd.
Some years back, before I was diagnosed with Ehlers Danlos and when the doctors didn't know what was wrong with me so thought it just best to tell me I was lying/attention seeking/needed a psychologist (choose whichever label you like, they were interchangeable and I never even got to see a psychologist!) I signed up with a different job broker. There seem to be rather alot of job brokers. No actual jobs for people with disabilities, or anything tangible being done about that situation....just well, alot of job brokers. I signed up with this job broker after being told that it was only possible to receive help from a job broker if you signed up to them...and that it's only possible to receive help from one particular job broker at a time. Apparently they receive funding for each person they sign up. So I sign up expecting that I'll get help appropriate to a disabled graduate in my situation. What I didn't at any point expect was to be hassled constantly by said job brokers to attend completely inappropriate courses on CV writing skills, confidence boosting, how to job search etc. All well and good, but not appropriate for my needs. I certainly never expected the postman to bring me envelope after envelope containing photocopies of job adverts from the local papers. Job adverts with deadlines days prior to my seeing them...or they would have been had I been waiting for the job brokers to cut the adverts out of the papers, photocopy them and send them to me via snail mail instead of simply looking at them all first hand in the local press like I was doing. In the end I managed to find a job myself and the job brokers were able to put it down with their figures as I'd been signed up with them whilst looking for work....aren't you glad this is all funded by your taxes?
So fast forward through getting really ill without knowing why, losing job, being diagnosed with EDS and here I am, in the job centre wondering why on earth I'm speaking to another job broker. That feeling grew. He said he understood I was looking for a job working from home. I said that I had some fairly major concerns about whether I am physically capable of working yet, and particularly managing to maintain anything regularly, and of course the position that puts me in with regards to benefits and managing to earn enough to support myself. The job broker wanted to know 'what was wrong with me' and why that caused problems with work. He told me that he thought someone in his office had 'that thing you've got that I can't pronounce....that doesn't it make your organs in the wrong place' er, well no, and not having been to medical school I'm not even going to start guessing at what the thing that makes your organs in the wrong place might be! I tried to explain to him that EDS is a collagen disorder, causing frequent joint dislocations, meaning it's extremely painful and tiring, that it's difficult to do basic tasks and I never know from one day to the next what tricks my body will play on me, but I could tell from the way his eyes kept drifting to my breasts that I was on to a bit of a loser. I told him it was like the difference between a 'normal' body being held together with super glue and my EDS body being held together with a piece of gum someone has chewed then left in the sun to go runny...he said he though it was a good analogy then looked at my tits some more.
By this point I was really uncomfortable, in every way. I apologised and said I had to get up and move around. My hips and SI joint were screaming and I had no choice but to lean my upper body flat on to the table to lever myself up, probably giving him a view right down my top. To his credit the jobs broker managed to carry on talking as I wobbled next to the chair, my hip visibly flicking in and out of it's socket. He talked about life coaches, listing skills, transferable skills, lots of nice things, until I said that was all well and good but I was afraid it simply came back to the same few problems again. I live alone and so have to be able to earn enough to support myself whether that is topped up by the benefits system or not. To earn enough to support myself on a part time wage from home I would have to earn at a relatively high level and part time home based jobs are notoriously low paid. The answer to this apparently was to book in at the job centre and have a 'back to work' calculation done to see whether I'd be better off financially working or on benefits. I said that I'd done that for myself several times the answer to which was to tell me I couldn't have done that! Apart from the fact that actually it's not that difficult to do on a rough basis, there's a very handy website which helps you figure these things out and now the jobs broker knows about it too.
I tried to explain to him that I had other concerns to do with practical issues, like for example how would I manage things when I had a more substantial injury or was ill and not able to work for a period of weeks or even months with no-one else to support me financially or practically. The answer to that apparently was that now New Deal is set up so that if for health reasons you have to go back on to benefits it happens within a day, but every experience I've had of the benefits system tells me that might be a nice idea but is about as far from the reality as it'll get. Nor do I believe that a job broker would sort it all out. More to the point though I like so many people have a fluctuating condition that goes through periods when it's more stable than others and that this the very system supposedly set up to deal with such issues doesn't even know what they are to start thinking about them let alone try to understand them.
The jobs broker told me that since I get Incapacity Benefit I can do something called permitted work and keep up to £86 a week. I said I didn't get Incapacity Benefit apart from the National Insurance credit contribution part and got Income Support instead. He wanted to know why. I then had to explain to him that it was to do with my lack of diagnosis meaning I'd not gone on to benefits until after I was 25 and so not been protected by the young person's rule despite having been ill and unable to work for years before that so I don't have the national insurance contributions either to entitle me to Incapacity Benefit. He said that as I get Income Support I would only be able to keep the first £20 of anything I earn as long as I work for less than 16 hours a week, and after £20 money would start to be deducted from my benefits so he suggested that I try to work between four and eight hours a week in an office, just to see how I got on at first and only keep the first £20. He said he had to be completely honest and say that in his experience often even just a few hours like this triggered the removal of the care component of Disability Living Allowance. He seemed to have forgotten I'd said that for physical reasons I needed to either work completely or almost completely from home.
I didn't need any sort of 'better off' or 'back to work' calculation to know that this is a situation that can only make me worse off even before I look at the finances. These are the very people the government have set up to try and address the barriers facing disabled people entering the workplace and address the numbers in receipt of sickness or disability related benefits yet seemingly few or none of these people actually have disabilities or any real understanding of the vastly differing barriers faced by us. There are specific and valid reasons I would need to work part time and from home and I know full well that doing so would increase the physical pain I endure every day, increase the fatigue, and practically make my life more difficult without any support.....but still it's something I want to do and feel will be worth doing. Simply ignoring the barriers I face and reasons for those problems and suggesting I 'just' do a few hours a week is not an answer, nor is the knowledge that the one and only non means tested benefit intended to meet the additional costs caused by having a disability will in all likelihood be removed purely because managing to find paid or unpaid work gives faceless bureaucrats an excuse to claim the care needs I have must no longer exist.
I apologised to the guy and said I felt like I'd wasted his time. I simply couldn't be bothered trying to explain to this young man who'd fallen into this job after university, unable to find anything he actually wanted to do, that I wasn't being difficult or negative, but that these are all the barriers stopping me finding a way of working and ignoring them because you don't understand them or know how to deal with them won't make them disappear. Part of me felt impossibly frustrated and part even more resolved that this is something I will have to figure out for myself as the system makes it impossible.
As I left the room I was faced with several blank key coded doors. I couldn't remember the way the security guard had brought me through the building and there was no way I could see of contacting a staff member for help. No one was in sight, the main job centre being on a different floor and there was no where to sit and wait. I took the only decision I could which was to use the main entrance with stone steps down to the street. Fortunately only a few, but precarious to say the least whilst clinging on to the side of the building for support and hoping not to be surprised by any additional dislocations sending me sprawling head first. I made it back across the road the way I'd came and gratefully into the car.
As I drove away I saw a hedgehog crossing the road, all spines and bluster looking so very vulnerable against the metal of my car. I stopped and dithered about getting out to carry it safely across, childhood warnings of fleas and disease ringing in my ears so I continued on home only to be compelled to return later to check it was safe.
The Disability Discrimination Act 1995 was the first time disabled people were given legal rights in the areas of employment, education, buying or renting land or property and access to goods, facilities or services. 1995! And still not all of the Act has come into force. Part 3 of the Act requires;
service providers to make “reasonable adjustments” for disabled people. A service provider is required to take reasonable steps to:
- change a practice, policy or procedure which makes it impossible or unreason-
ably difficult for disabled people to make use of its services
- provide an auxiliary aid or service if it would enable (or make it easier for) disabled people to make use of its services
In addition, where a physical feature makes it impossible or unreasonably difficult for disabled people to make use of services, a service provider has to take reasonable steps to:
- remove the feature; or
- alter it so that it no longer has that effect; or
- provide a reasonable means of avoiding it
- provide a reasonable alternative method of making the service available
So, I turn up for my appointment at the job centre to find firstly that I can't park. This for me is a fairly major and common problem. Like many people who struggle with their mobility my GP referred me to be assessed for an electric wheelchair. I need an electric wheelchair or suitable powered aid because my upper body is funnily enough attached to my lower body. Even more strangely that means both my upper and lower body have the same genetic disorder...whaddya know! It sort of makes sense really! What doesn't make any sense is to be refused a powered wheelchair on the grounds that 'they aren't provided for outdoor use unless you first use one solely indoors for a minimum of six months' eh what? This is to be the subject of a post in it's own right, but suffice to say that due to more NHS, Social Services, public sector, actually I don't know who quite is responsible for wheelchair services, stupidity I don't have a wheelchair because I'm not capable of self propelling and don't have someone to push me around. God that's one hell of a good way of cutting costs!
Back to the job centre...where thanks to our local council's dramatic refurbishment of town there are now only spaces for 3 cars outside job centre, and of course all are taken. I had to park in a side street, which in small town land was luckily close enough, but then had to figure out how to negotiate kerbs and modern cobblestones. The pedestrian crossing was simply too far away for me to be able to walk to so I had to take my usual gamble that traffic stops upon sight of an extremely small person very slowly limping across the road. I find smiling at drivers helps...alot. It doesn't however help the fact that the bastard kerb stones have been increased in height so much that I could neither get up nor down them without dislocating multiple joints....Clearly another reasonable adjustment. I grit my teeth and hope not to fall headfirst into the road. Happily the cars stop again...this time.
Despite confident instructions from the job broker that I am to go in via the main entrance I can see the three large stone steps up to the front door, and unlike him understand that steps are just a bit of an obstacle to anyone with mobility problems. That means I have to go around the side of the building to the 'disabled' entrance which of course is not a problem unless you have mobility problems, in which case any extra distance is like a marathon. It's worse when trying to walk on unstable joints over fucking cobblestones that cause pain to ricochet throughout my body, make it impossible to place even my small feet down safely or solidly and increase the risk of falling by about a gazillion. Yep, putting in new cobblestones was a wise move by the local council. I've heard it referred to as 'granny skittles' as every time you drive through this particular town you see another old person toppling over the posh new cobblestones.
Finally, wincing I get round to the 'disabled' entrance which of course is locked. There's an intercom which I push and have to wait several minutes for someone to answer. I'm waiting outside, on the pavement, cold and in more pain from the cobblestones, wobbling trying not to fall in the road, cross from the humiliation of having to ask permission to enter a building open to the public. As I wait there I realise I have hurt my shoulder joint from having to reach so far up to the intercom then gape in utter amazement as I work out that the intercom is sited so far up the wall it is impossible for any seated person to reach. People in wheelchairs as a rule are sitting down and this very intercom for their use is sited just below normal eye level. Clearly someone has previously complained as a token doorbell has been placed at sitting level. It seems like it was either too much effort or not thought of to move the intercom to an accessible position for the very people it's intended for.
Eventually, slowly a security guard creaks into view. I hope nothing bad ever happens in small town job centre as this security guard kindly though he turns out to be will not be capable of securing the staff from anything. He must be on new deal. It seems not only do I have to ask for permission from an intercom sited out of my reach, and impossible for a wheelchair user to use, I have to then wait to be let in to the building, there is no automatic unlock facility. The security guard asks if I have an appointment, then says he thought it would be with job broker as I start to follow him through to the room. He slows down as he sees I am unable to keep up with him, struggling to follow I joke at the implausibility of the situation, he replies sympathetically that he has complained, repeatedly but nothing is ever done and no-one listens.
So after I spoke to the better than a physiotherapist massage bloke, I briefly spoke to a very lovely girl who insisted that she could help me get funding to do any course I wanted to do. I had a few suspicions about this as well having previously looked at funding to retrain and always run up against the same problem that as I already have a degree I can't get funding to do another one, or any kind of appropriate course even though, y'know, funding an appropriate course would potentially mean not paying to keep me on benefits for the rest of my life, but still mustn't think that way, far too logical for the welfare state. So, I explained this to the very lovely girl who says to me that she works for this great company who spend all their time finding the funding for courses for people to get back into work. Not exactly true...turns out they can provide funding for some courses but overall they're yet another job broker.
So then I spoke to a fireman. And no, he wasn't there on a recruitment drive. He was there doing the whole fire safety road show thing they do these days, making sure people have up to date smoke alarms in their homes, and if not organising for them to be fitted free of charge along with a specialist fire safety check if needed. Quite where the energy saving lightbulbs they were giving away came into fire safety I'm just not sure, but then I don't really know how giving me a plastic bag full of lollipops, keyrings, massage vouchers, weird anti key fishing device and a load of useless leaflets that went straight into the recycling bin could possibly help me to get a job either. But then if anyone can come up with a credible answer as to why a massage therapist, fireman and some girl offering funding for courses should be called a jobs fair I might just start stripping....and with my levels of co-ordination and contortion that could be seriously dangerous.
Monday, July 09, 2007
It's too easy to think it doesn't apply to you. Every single one of us is but one moment away from becoming a disabled person. Please take just a moment of your time to sign the petition to enable the full inclusion of 50 million European people.
Sunday, July 08, 2007
I woke up to the most dramatic, crashing, powerful rain. Fucking rain. Seems like, feels like it's just never gonna stop raining. All day I dozed off and on as it carried on raining and not.
Now it's later and I'm sleepy still, but still fighting it. Always I'm surprised by the extent to which this can overwhelm my body. All these years on, all this acceptance yet still it surprises me and still I try so hard to fight it, perhaps not so accepting after all.
The reason for such somnolence is two days of for me intense activity, for you probably two quiet and relaxed days, but for me enough to render this day lost.
The important meeting, then a second important meeting as consequence of the first with consequences all of it's own. Then a day all of fun, flying kites, ice creams, a man in a shirt claiming 'hugs not drugs' completely bewildered when I hugged him briefly passing by on the street giggling as I did so at the ridiculousness of his confusion.
But too much without stopping to pause, so for today at least, tomorrow yet to see it is enforced upon me
From July 26th 2007 bookings will no longer be able to be refused by airlines, travel agents or tour operators on disability grounds.
The bad news...it's 2007 and just goes to show how incredibly far we have to go before people with disabilities are given the kind of legal rights other groups in society now take forgranted. Disability rights is the civil rights movement of the early 21st century, so why is it not being fought in the way other civil rights battles were fought so proudly and publicly?
Saturday, July 07, 2007
I spent an hour this morning (well afternoon but I got out of bed so late it's all relative) wandering/staggering from room to room and out to the car to try and find my bluetooth headset. In the process I fell over the bottom of my own jeans twice...once at the top of the stairs which nearly got a bit unpleasant but we'll gloss past that one, managed to wiggle back the dislocated hip from yesterday so that was an acheivment, and only forgot what I was supposed to be doing for about half the time which really isn't bad going!
What I didn't at any point do was find the headset that I suspect I'd started to look for to make a phonecall that I can't remember who to now in the first place.
I gave up, got distracted by facebook and figured that either the headset would turn up in the end, or I'd dropped it when out at yesterday's meeting. I'd forgotten yet another factor in missing items in my home...not just my amazing spandy ability to project things seemingly against the laws of physics, oh no, something far more complex and sophisticated than that...the domestic cat. Two of which reside in my household, both of whom are capable of extreme acts of wilfulness, and one of whom was quite happily curled up on my amazing bean bag sofa the entire time I was hunting down my headset, only to uncurl, stretch and saunter off in search of a more pleasing patch of sunlight just 10 minutes ago revealing underneath her the bloody headset I'd been hunting for! Typical.