Friday, October 30, 2009
The quality of care provided by the NHS is much maligned in the UK, primarily because we're so spoilt by having universal health care, we have no idea how valuable it really is. A cornerstone of the NHS is General Practice. One of the many, current, back of a fag packet, political ideas is to 'open up' access to general practice by bringing in the idea of 'health care professionals' and supermarket style polyclinics. Of course, like all such ideas, it's been conceived by fit, healthy, younger people who have no idea what GP's do beyond the odd smear, travel vaccine or prescription for antibiotics. People who don't need to use General Practice services so don't understand why they are important.
My GP retired last year. He had never met anyone with Ehlers Danlos Syndrome prior to my joining the practice, but he went out of his way to educate himself on the condition. I changed practice so that he became my doctor a few months after I was first diagnosed, his patience and support were invaluable in my lengthy recovery. There have been many changes to the practice since he retired, mostly long overdue modernisation. Unfortunately the consequence to all this shiny new equipment and ways of working seems to be a drop in the standard of medical care.
If you have a long term condition, particularly a condition such as Ehlers Danlos Syndrome which is considered 'rare', it's very difficult every time you see a new doctor. Lengthy, complicated explanations are often required to get through the basics of a medical history, before the actual reason for the consultation is reached. Inevitably this forces appointments to overrun and puts the whole day behind. It also makes the job of the doctor much more difficult as they have to try and get up to speed on a condition they may not have heard of since medical school as well as understand the difference that makes to the diagnosis or treatment of the current problem. That's an incredibly tall order in a ten minute consultation.
It's not just people with rare conditions in this situation, an average day for a General Practitioner will include any or all of the following:
Granny who broke her leg last year, ended up in hospital for a month and now takes 7 different potentially interacting medications for conditions she can't say the name of, let alone recall when she was diagnosed or even what she's supposed to do with all these medicines. Yummy Mummy who's heard bad things in the press about MMR and is totally bewildered as to what she should do, needs reassurance and explanation about whether she should vaccinate her child. The 13 year old Vicky Pollard screaming and shouting in reception about her 'rights innit', competing with the middle aged man bawling out the receptionists for not getting the collapsed asthma attack out of the treatment room so he can have his travel vaccines.
A good GP would know Granny gets confused about her medications, because Granny comes to the surgery every month confused about her medications. That the Yummy Mummy is usually very sensible but has a nephew on the autistic spectrum and doesn't know if the things her friends say about MMR are credible. That Vicky Pollard was a sweet, well behaved little girl until her mum died last year and her dad hit the bottle hard and this is their first holiday since then.
My GP knew that if I had to even mention pain to him, it was serious. I miss the difference that background knowledge made to my medical care. Now I may be able to see a doctor any time I like, but the only people left who know whether my joints are in a good or bad phase are the receptionists.
Thursday, October 29, 2009
Saturday, October 24, 2009
I made it to the bench again today. Hot chocolatey, low calorie, chemical crap substitue drink intact. Which is more than I can say for the pavement. That was showing various signs of my previous visits. At least I know where the mug I was sure I remembered having went. Maybe someone will find it in hundreds of years amongst the splatters of peppermint tea and skinny latte I've spilt and pontificate as to what it all means.
I made it to the bench though. Yeay! It was nice. The sun was out, the birds were singing. There was the hot chocolate imposter. There were even helicopters and lifeboatmen. People smiled at me, I smiled back at them. What's not to like?
Other than, it's y'know, a bench. And it was the most exciting thing I did all day.
Thursday, October 22, 2009
First posted 4th June 2009
Today in England the elections for the European parliament are held. As so many people wish to protest against New Labour and the all party expenses scandal smaller parties are expected to do well. In many areas the BNP ( British National Party) have been campaigning heavily. Most people are aware that the BNP are primarily racist thugs, but I doubt as many are aware of their views about disabled people.
After the tragic death of David Cameron's son Ivan earlier this year Jeffrey Marshall, senior organiser for the BNP made this statement on an internet forum:
"We live in a country today which is unhealthily dominated by an excess of sentimentality towards the weak and unproductive. No good will come of it."
Later, in response to other comments on the site, Marshall allegedly wrote
"There is not a great deal of point in keeping these people alive after all."
Many people, including myself, are so disillusioned and disgusted by the behaviour of politicians they don't know who to vote for, or even whether to vote at all. Whilst that's understandable, it's also likely to lead to gains for extremist groups such as the BNP.
A society should be judged by how it cares for it's most vulnerable. The BNP believe that to be an excess of sentimentality and can't see the point in keeping such disabled people alive. Is that the kind of country we really want to live in?
First posted 8th June 2009
On such a depressing day, particularly for those of us living in the North West, the best thing we can all do is put aside our anger and remember what it is we love about being British.
For me the most important part of my British identity is freedom. Freedom to believe in whatever I choose to believe in, and so long as they harm no-one, the freedom to live my life in accordance with those beliefs.
My family were immigrants, Jews fleeing the persecution of Russian pogroms on my maternal side, and Irish seeking work on my paternal side. Such a background means I believe in freedom of thought and expression so vehemently that regardless of my disgust for their politics I absolutely support the right of parties such as the BNP to believe whatever they want to believe.
Previous generations laid down their lives for us to be able to live in such freedom. It's equally important now that we fight as bravely as they did. Instead of guns and bombs our weapons should be freedom and justice. It's too easy to think that nothing we do makes any difference and become apathetic. Just one small gesture performed every day by each one of us can make enough difference to change our society.
Today my gesture was to visit the grave of Lieutenant John O'Neill, VC. Lt O'Neill is buried in the cemetery a few streets away from my home. His grave was looking like it needed some love and attention when I discovered it a few days ago, so today I returned to clean it.
What will your gesture be?
First posted 16th June 2009
"An open letter from The Royal British Legion to Nick Griffin, Chairman of the BNP and MEP for North West England.
09 June 2009
Dear Mr Griffin,
We couldn't help but notice that there was egg on your face (and on your suit jacket) on the day after you were elected MEP for North West England.
Please don't leave egg on ours.
You wore a Poppy lapel badge during your news conference to celebrate your election victory. This was in direct contravention of our polite request that you refrain from politicising one of the nation's most treasured and beloved symbols.
The Poppy is the symbol of sacrifices made by British Armed Forces in conflicts both past and present and it has been paid for with blood and valour. True valour deserves respect regardless of a person's ethnic origin, and everyone who serves or has served their country deserves nothing less.
The Poppy pin, the Poppy logo, and the paper Poppy worn during Remembrance are the property, trademark and emblem of The Royal British Legion.
For nearly 90 years, The Royal British Legion has pursued a policy of being scrupulously above the party political fray. It is vital that everyone - the media, the public and our beneficiaries - know that we will not allow our independence to be undermined or our reputation impaired by being closely associated with any one political party. This is more important now than ever.
On May 27th, 2009, the National Chairman of The Royal British Legion wrote to you privately requesting that you desist from wearing the Poppy or any other emblem that might be associated with the Legion at any of your public appearances during the European Parliamentary election campaign.
He appealed to your sense of honour. But you have responded by continuing to wear the poppy. So now we're no longer asking you privately.
Stop it, Mr Griffin. Just stop it.
The Royal British Legion"
For all of us who believe the BNP do not represent us or the Britain we live in, then please sign the 'Not in my name' petition
Wednesday, October 21, 2009
First posted 19th August 2007
It happened at about 7 o'clock. We were all in the kitchen, laughing, joking, messing around, Princess Fairy Toes teasing me about my inability to cope with the three people crammed into my small kitchen, clearing up the mess from dinner, Siobhan washing up, visiting for the weekend.
I was already tired, Siobhan and I having been on a girly shopping trip earlier in the day so none too steady on my feet as I tried to open the cupboard under the sink. My hips dislocated, I wobbled and fell. As I toppled forwards the corner of the open cupboard door broke my fall before I hit the floor...unfortunately hitting smack into the corner of my collar bone and throat. The impact was hard and harsh. My collarbone popped itself out to the side, dislocating rapidly out and relocating itself back in a moment later, visibly damaging the tendon attached at the tip, running up into my neck as it went. More importantly though, my thyroid dislocated out as did my larynx.
That was it, I couldn't breathe. My throat shut firmly into spasm. Toes and Siobhan had dropped everything they were doing when I fell, Toes catching me in the small kitchen, knowing something was very wrong. He saw my collarbone pop in and out, and as I struggled to work out what had happened, my hands go to my neck, heard the crunch as I reached up and pushed my thyroid gland back into place. Later said he saw something else move around more disturbingly that he knew to be my larynx.
Both Toes and Siobhan asked if I was ok. I couldn't speak properly. I realised I couldn't really breathe either. So used are we all to falls, dislocations and any manner of trauma none of us were particularly panicked, Toes moved me into the lounge where it was lighter and more spacious so he could sit me down and see what had happened. Then he did worry. I still couldn't breathe properly. One minute I was fine, next I couldn't breathe. Couldn't speak properly to explain what was wrong. Toes wanted to know where I kept my pens. He wanted a 'biro' to hand....just in case he said. I flapped my floppy hands, wheezed a bit and managed to croak I was fine. Was breathing by then. Then I couldn't again, my throat spasmed tightly shut. Open again. Spasmed shut again. It was lasting for around a minute, minute and a half at the most. I was looking a little blue about the gills.
Toes found my ventolin inhaler and gave me a dose of that, concerned as I'm not usually wheezy. He then got the oramorph from the fridge, gave me 5mls of that which I choked and spluttered on a bit but swallowed, then promptly stopped breathing again. I'm well set up for all manner of emergencies at home, having these days an exceptional GP who prescribes wisely, but all three of us realised that this was more than typical. By now a few minutes had passed and I could speak a little, though not properly, my voice trailing off into slurring and nothingness after only a couple of words. We considered calling an ambulance, driving to A&E or staying at home and realised that I was going to have to go in, but not by ambulance. I have extremely strong views about the use of ambulances. They are for severe and life threatening emergencies only. We had access to a car, someone to drive, someone to help me, and it was probably quicker and easier just to drive. Or maybe I'm just afraid of ambulances as well as hospitals.
We found house keys and mobile phones and went out the front door. I collapsed in the road. My body was clearly struggling to cope with the shock. At my bendiest time of the month anyway, the spasms caused by multiple dislocations and shock were having huge impact sending me into what we fondly describe as a spaz attack...where I become so lax and floppy I dislocate constantly in and out of multiple joints causing me to look a bit like Elvis on a bad acid trip gone seriously, profoundly wrong. Its usually pretty amusing, especially as I tend to howl with laughter...but the lack of oxygen thing meant not so much laughing this time. That came later.
We got to the hospital quickly. Like most hospitals now you have to go through a barrier into a car park so they can later charge you to get out. A&E is no exception to this rule. Toes needed to drop us off as close as he could to A&E. It wasn't close enough. It was obvious I wasn't going to be able to walk the handful of metres to the doors. Siobhan had to half drag, half carry me into the building whilst Toes parked and ran back to get a wheelchair which he plopped me into just before I hit the floor at reception where Siobhan was struggling to hold me up.
First posted 19th August 2007
Part 2 A&E
We had to give my details at reception, name, date of birth, address, next of kin, usual stuff. All a bit difficult when you can't speak more than a croak or two and keep stopping breathing. Still a formal requirement though. Even when the details of an accident involving a cupboard door corner to the throat have been given. I made squiggly signs with my hand, but it took Siobhan to tell the receptionist that meant I wanted a pen to write down my details rather than trying to talk which by then I'd realised was making things worse.
The receptionist told us it wouldn't be long before I was seen in triage, and it wasn't. I was taken through and seen by a nurse I'd seen on a previous A&E visit. A nurse who claimed to know all about EDS. Siobhan explained to her what had happened, as I couldn't speak well enough at that point, my throat spasming too much, stopping me from breathing if I tried. Toes wandered back in towards the end of the triage assessment, he works in the same hospital. She told him she'd categorised me as yellow, so I'd be seen fairly soon, and as there was nowhere to put me in minors, I'd be safe in the waiting room as he was with me. Spending most of my life with the EDS undiagnosed and the label of attention seeking/mental has taught me a thing or two, and I knew both that she was making a bad clinical decision, and that it was personal. Whether that was directed at me or Toes I had no idea. Nor could I be bothered to do anything about it. Breathing was far more of a priority and frankly hard work.
Toes and Siobhan wheeled me back out to reception and we sat there and waited. When I was fine I was fine, but when I wasn't I really wasn't. My throat was continuing to spasm down hard every so often stopping me from breathing in. It still wasn't lasting more than a minute or two and I was getting used to it, not too worried it would carry on longer, but still a bit frightening when it was happening. Toes disappeared off a few times, looking for colleagues he might know, concerned that I'd been sent back out to sit in the waiting room.
After 20 minutes or so, the friendly looking man we'd seen coming in and out came and called me in. We'd thought he was a nurse the way he was coming out into the waiting area, and interacting with patients, but he was a senior registrar, in fact the most senior doctor in the department, and I'd noticed him keeping an eye on me earlier when I was struggling to breathe. He took us back through into the triage area, obviously none to happy with the nurses assessment and did his own. He asked me what happened, and with the help of Siobhan I managed to explain. The difference this time was that he actually did understand EDS instead of just dangerously pretending to. We managed to communicate that I'd dislocated my hip, so fallen, dislocated my collarbone and thyroid and we thought larynx too. His eyes got a bit wide when I croaked that I'd dislocated my thyroid, and he asked how I thought I might have done that. The easiest way to explain was to take his hand, place his fingers gently to my throat, and dislocate my thyroid gland back and forth. His eyes got very wide at that point and after giving me a chance to recover from the spasm that triggered off, laugh kindly at my attempts to tell him I was fine and there was nothing wrong with me I was being taken straight off to majors. I heard him very firmly telling the previous nurse that he didn't care if there wasn't any space they were to make space. If they didn't have it in 'resus' then majors would do.
The doctor wheeled me through himself and found a room in majors. A nurse came in to throw a sheet over the trolley, and that was the last contact with any nurse I had. The doctor came back in, introduced himself properly, turned on the oxygen and told me to put the mask on. He wanted to have a look in my throat, so needed me to open my mouth, at which point my jaw promptly dislocated. I gave it another go, and he managed to get a brief look. I was able to speak a bit more by this point, and so could better explain to him both what had happened and what was happening now. Mostly I tried to tell him I was fine. Nothing wrong. He seemed to find that highly amusing. He said he'd spoken to the doctor on call for ENT, and that she was already on her way in, that he expected I would need to be 'scoped' and that he was going to give me some hydrocortisone straight away. I tried to insist there was no need and my throat spasmed shut again.
The doctor went off and came back with the kit to put a drip in my arm, and the hydrocortisone injections. He chatted away to us while he put the drip in, asking about whether I was good with needles (just good at ignoring them) and joked a little about the strange position I'd naturally contorted myself into on the trolley.
By this time I'd realised that the reason my chest hurt so much was that one of my ribs was dislocated. Siobhan had let the doctor know when he came back into the room to do the drip, and after checking it, he asked if I could put it back myself. I said not a rib, but that he could. I was extremely impressed that he didn't make a fuss about unnecessary chest x-rays, and once I'd given him the go ahead, attempted a reduction there and then. The rib was determined to stay out though, so after a couple of attempts we both agreed it was best left out.
Shortly after that the on call ENT doctor arrived, surprised I think to be apologised to for wasting her time and dragging her out on a saturday night. She quickly assessed the situation, by this time a few hours had passed since I'd fallen and hit my throat, and the spasms were getting further apart, my speech much easier though my voice was exceptionally hoarse at best. She checked with Siobhan to ensure that my normal speaking voice wasn't hoarse, and I didn't usually cough the way I was, and after a quick feel of my throat/neck area and exclaiming over how incredibly lax and hypermobile it all is she decided she wanted to go ahead with the scope. She also said she'd really like to keep me in in case she had to take me to theatre, but after seeing how much I panicked at the mere mention of staying over night she said she would leave that decision until after the scope.
She went off to get the scope and prepare, and the doctor from earlier popped back in to say he was going off shift and hoped I'd be ok. We thanked him very much for all his help.
By that time I needed to go for a pee. I slid off the trolley to find I was still in full spaz attack mode. I had nothing stable in my entire body. Hips, knees, ankles, SI joint, all were flicking in and out of their sockets randomly and rapidly. Siobhan part held, part dragged me towards the toilet. To get there we had to go through the middle of two large groups of nurses, it must have been shift change. As we went to the toilet, despite being polite and lucid I was stared at with the disdain I'm sure they rightly give to vast numbers of weekend drunks, and received the same treatment on the way back...from both groups. Now, I'm used to the odd member of the public feeling that they can randomly accuse me of having been drinking if I'm flopping all over the place in say the supermarket, which is hurtful enough, but its far, far worse when 'that' look comes from supposedly highly trained professionals during an emergency medical situation. Not one of the nurses offered any help, asked if we needed a wheelchair, or in fact did anything but blatantly and openly stare.
We got back to the room just as the ENT doctor was coming back with the 'scope'. She looked at me in a totally different and perfectly acceptable way, laughed along with us, and asked if things were always this difficult for me. Talking was easier by this stage, but still hard work, so Siobhan explained things to her, including that my thyroid can dislocate, but wouldn't usually cause this kind of problem, and she very rapidly grasped that the problems were most likely being caused by the internal laxity of my throat, allowing it to fall shut on itself, spasming as a reaction to the dislocations, unlike in a non-EDS person who's collagen is nice and strong and not like melted runny chewing gum.
Whilst she was setting up her scope kit she said that ideally she'd like to keep me in for observation, even if everything was ok, but when she saw how frightened I was by this, she asked why. I told her I'd only been diagnosed with EDS for about 3 years, and before that I was 'mental'. That by now oh so familiar look flickered across her face, shock, horror, disbelief, comprehension, shame, understanding, compassion. Siobhan explained that actually although I was able to cope in hospitals as long as I thought I was going home, due to all my previous experiences staying overnight was beyond what I could cope with emotionally. I said I wasn't stupid and nor did I want to land her or the previous doctor in any hot water so if something was badly wrong on the scope then I would do as she wanted, but if it was 'just' spasming, then I wanted to go home. Please. Please.
She popped the scope in my mouth to warm it up, then into my nose and got me to swallow it down into my throat. I can think of better ways to spend a saturday night, but I've had far worse done to me. Fortunately everything was ok, nothing broken or torn inside my throat, just red, and a little swollen. The spasms were getting further apart and I was more able to cope when they did happen, so she was happy to let me go home if after a further 45 minutes without any oxygen I'd not had any problems. Siobhan was staying with me anyway, and promised to keep a close eye on me, having already chatted to the doctor earlier about handling these kind of issues, I suspect she may have agreed that in the absence of any repairable problem I'd be better off being cared for at home rather than by ward nurses rushed off their feet.
The doctor explained a little about laryngospasm, and said she was sure I'd dislocated my larynx and was now experiencing these spasms as a result of that. She was insistent that if I had any difficulty in breathing, had any noisy breathing, or got worse in any way that we were to come back in immediately.
She went went off, popping back in around 20 minutes later to check on me and give us a chance to thank her very much, then we waited another 30-45 minutes, with no further problems, and at the end of that time Toes reappeared and we started to sort ourselves out to go home.
Tuesday, October 20, 2009
Today I made it out of the flat and back to the flat without needing to be rescued. Which was a good thing. Not all of my neighbours are cute. I avoided the rescue by not actually going anywhere further than the nearest bench. In the rain. It was high tide and I wanted to see the birds and listen to the waves. Worth every moment even if it did hurt like a bastard. Besides, there was hot chocolate. That's always good. Even if it is the crappy low calorie kind. All the chocolate is not helping my joints. Which will never, ever be good. The impending chocolate ration that is. I think someone should definitely invent a cure for pain which involves special not making you fat chocolate.
So that was high point number one. The bench. As high points go it's not really, you could even call it quite low for a bench. The next one was better. Only cos it involved the related sport of chair standing, water spilling, goldfish hate crime though. A while back I found a little fish bowl in a charity shop. It seemed like a good idea and for some reason I thought Bendycat might like some fish to look at and that's how I ended up with the fish. Fishy and Fish. Don't ask. Bendycat doesn't even like them. Just sits and howls at them in the middle of the night so next door's hideous yappy dogs start barking.
The chair standing, water spilling was cos the fish needed cleaning out. A sensible plan when your legs can't safely hold you up. Well, it seemed more sensible to climb on a chair to empty the bowl bit by bit than to tip the bowl all over myself. Perhaps sensible isn't quite the right word.
The goldfish hate crime was the fluorescent pink ladle I had to use to catch Fishy and Fish. Whoever said goldfish are stupid clearly never spent an afternoon chasing a goldfish round a 5 litre tank with a fluorescent pink ladle. Those fish definitely had better strategies than me. It took ages to catch Fishy, and Fish had definitely learnt from Fishy's experience so cunningly hid behind the water pump thing where the ladle couldn't fit.
If that wasn't bad enough, while I was cleaning the tank and dropping wet fish gravel all over the place I put them in a tiny bowl in the middle of the kitchen table where they swam round in a frenzied pink ladle panic. I thought Fishy was going to kill Fish! I checked but couldn't find Bendycat anywhere so the fishies may well have known something I didn't. They've definitely got PTSD now. Wave a pink coloured thing near the bowl, they go nuts! Although they did that for food anyway. Must be the pink. Hand/ladle. Not a good combination for goldfish. They're still alive though even after all the pink trauma. So that's good.
No chocolate's not though. That's just mean.
Monday, October 19, 2009
The reason I'm having a full blown pity party is I've just had to be rescued by a passer by for the fourth time in a week.
The interest rates for a loan from the spoon bank are far more crippling than any loanshark could come ever dream up. I knew that when I made the decision to wear stupid, stupid, oh so pretty, stupid, stupid shoes. I knew that when I made the decision to dance. In not nearly so stupid, or so pretty but quite sensibleish really shoes. I knew it when I decided to stay out late. I knew it and I did it all anyway. It was well worth it, thinking back now puts a genuine smile on my face.
One guest at the pity party is fickle hope. When I put on the stupid shoes, the height of the heel made my hips feel better. Wearing heels changes the position of the hips and pelvis, and for me tips it all into a more comfortable position. Unfortunately wearing heels also translates the most unstable part of my body from my hips to my knees without removing the instability from my hips. Or anywhere else. I was very fortunate that the stupid shoe wearing event coincided with the part of my menstrual cycle when I'm at my least spandy bandy. It's less fortunate that the after effects of all the stupid shoe wearing, stupid dancing, coincide perfectly with my most bendy part of the month.
The self pity, all time pity party guest of honour, is the nagging voice of pain, whispering in my ear, a knowledge I don't want to hear. That my joints have slowly but surely been worsening for months.
Sunday, October 18, 2009
Whilst legislation has been passed in an attempt to enforce equality regardless of attitude, it seems that some laws are more important than others*. Widespread, media driven, public furore frequently occurs over issues such as race or sexuality but for some reason discrimination against disabled people is explained away, usually by the very same outraged and righteous individuals.
The Disability Discrimination Act of 1995 (DDA) was supposed to be the answer to this problem. However, unlike other legislation designed to deal with discrimination, The DDA is all bark and very little bite. Legislation, rightly or wrongly enables us to complain to the police if we are verbally abused about our race, sexual orientation, or religion, but just try doing the same if the discrimination or abuse has been experienced because of disability, as Fiona Pilkington and her disabled daughter Francecca discovered to their tragic cost.
When looking at examples of bad practice regarding accessible toilets for the Bog Off series I don't usually name the business involved. I live in a very small area and most are small businesses without the resources to make expensive adaptations. It feels very unfair to name and shame without having given the business a chance to put their point of view. It's different when it's bigger businesses or the public sector as they do not have the same paucity of resources and frankly should be setting the example by upholding the law to which all businesses are obliged to adhere. The business featured in this Bog Off! is in such flagrant disregard of the law that I'm taking the step of discussing it publicly.
The Leverhulme Hotel is a recently opened luxury hotel in the historic village of Port Sunlight, which has been restored aimed firmly at the wedding market. Beautiful location, beautiful building, what's not to like, right?
Well, it's pretty. I'll give the owners that. Just don't expect to be able to experience it's prettiness if you're disabled, older, injured, or in any way not fully fit. Obviously the hotel owners thought that disabled people wouldn't want to get married, or even attend weddings because access clearly wasn't even a token afterthought when they planned how to convert the building.
Upon arrival I asked the very young staff member where the disabled entrance was. She looked most bewildered** and had to think about it before informing me there was an entrance but it was "all the way round there" I'm still no wiser as to where "there" is, but I'm guessing it was a bit of a trek as there was no visible sign of it. There were two steps up to the entrance, nice looking stone steps which, in keeping with many older luxury properties, are of the low rise variety. There was no handrail on either side of the entrance, and it later turned out there were no handrails on any of the many sets of double steps I saw around the building. Steps which were impossible to avoid. Steps which were all made out of nice slippery surfaces like highly polished marble. So, not only was there no wheelchair access, but if you happen to be a bride wearing unaccustomed heels, a little older and unsteady on your feet, a bit tipsy in the way people usually are at weddings, or even carrying a baby, forget it...there was nothing you could hold on to for balance***
Not that there was any disabled parking either. Fair enough, a great yellow wheelchair symbol painted on the ground next to the entrance might not look as pretty in the wedding photos as the odd, water sculpturey thing the local chavs consider their own during the hours of darkness, but there's no excuse for not having accessible parking spaces alongside the rest of the parking. If there were any I obviously couldn't walk far enough to notice them.
Unfortunately I cannot feature a photograph of the disabled toilet as is customary for the rest of the Bog Off series. No, not because I'd self medicated too much to remember to take the photo, but because there was no disabled toilet. The, again, very young staff member I asked, looked seriously uncomfortable when she informed me the venue didn't have one. I'm in the very fortunate position of being able to manage without grab rails**** or supported seating, which as long term blog readers know is a good thing given my ability at times to wee for Britain! Many people aren't so lucky, and what they were expected to do had they been attending an event there is anyone's guess. There was absolutely no way a wheelchair user would have been able to use the existing toilets as the cubicles were too narrow, and the toilet too far from the door for even that kind of lack of dignity emergency wee. I wouldn't fancy trying to use the toilet if you had any kind of visual impairment either as it was quite dark once inside the cubicle. There didn't even appear to be any baby changing facilities in the ladies, although they could have been hidden behind the 'out of order' sign on one of the toilet doors.
Perhaps the Leverhulme Hotel plan to build an accessible toilet as and when they eventually complete building the ballroom they book for wedding parties? For a business so dependent upon good publicity they'd do well to address the complaints people have been registering about the lack of ballroom for quite some time.
I'm not sure if there is a lift anywhere in the building, but the stairs to the upper floor at least had handrails on either side. Which is unfortunately about the most positive thing I can find to say about the access.
As the ballroom at Leverhulme Hotel is still literally a building site, the wedding guests were seated in a much smaller room. Although there were only about 60 people at the wedding this still meant squeezing an additional table into the room so it was best to be on friendly terms with all present! Happily the waiter was wearing deodorant as his armpit was worryingly close to my face on several occasions.
Food was served buffet style in the adjoining room. Leaving the table room to enter the food room there was a slight step down, then a slight step back up right next to the beveled metal edge of the dance floor, all within about 50cms of each other. Fortunately another guest had a reasonable grip on my arm as I stumbled trying to get into the food room, had I been alone I would have gone flying. I was concerned someone else might trip there, which happily didn't occur, but I saw lots of people catch their feet and stumble as they moved between the two rooms.
The lack of attention to detail was evident throughout the hotel, as was the absence of more senior staff members. The biggest day of a couple's life is not the time to focus on anything other than the fabulousness of the day, and I'm fortunate to have the kind of disability where I can find various ways to manage. That is not the case with many disabilities. I wonder, how many people would feel forced to suffer in silence, or be unable to even attend their loved one's wedding, if the Leverhulme Hotel don't improve their facilities to include access for everyone.
*The way our MP's have behaved should mean this is no surprise to anyone!
**Which is understandable because as we all know, you can't tell by looking at me!
***Unless you follow my example and insist on being escorted everywhere by the nearest man you could find who was willing to lend you his arm!
****toilet roll holders work reasonably well for the purpose if you don't weigh much!
Tuesday, October 13, 2009
This Bog Off was photographed at a local pub. It had the typical problem of the help cord being tied up out of reach of anyone on the floor. Also, although this was a toilet with specific extra support provided for a disabled person, as is all too common the placing of the grab rails and sanitary disposal bin made it impossible for a wheelchair user to safely transfer back and forth.
However, as the title indicates the biggest problem with this loo was one which couldn't be photographed....and count yourselves lucky it couldn't! Oh my! This toilet stank, it smelled bad enough to make you retch! To be fair, it was a very hot day in July, however looking at the bin overflowing with soiled nappies it clearly hadn't occurred to anyone that they might need to empty the bin once in a while.
Which was a great shame, because it was a lovely pub, with a beautiful beer garden and generally access was reasonable. However, rightly or wrongly like many people I always that if the toilets aren't clean then the kitchen probably won't be clean enough either and that's enough to put me off going back there!
Monday, October 12, 2009
As we all know conversation on these occasions is pretty much limited to the school of "How are you?" I've now got a fairly standard 'yes I'm well thanks, had some health problems, interfered with career but all is good' then quickly deflect the questions back to the other person kind of answer. Upon reflection I decided that the only advantage of attending a wedding solo is not having to endure additional interminable questions about my lack of partner!
Almost without exception every person I mentioned having experienced health problems to replied with the statement "You can't tell by looking" or some variation of. Five words that seem so innocuous yet always leave me slightly flummoxed, because how on earth are you supposed to respond to that when you're not even sure what its supposed to mean?!
I've pondered this question on many an occasion but I'm still not sure of the answer. The popularity of But you don't look sick and the spoon theory indicate that the "you can't tell by looking" problem is a common one both for those with invisible disabilities and those without.
As far as I can make out, "You can't tell by looking" means any or all of the following things;
- Shut up! Seriously, shut the fuck up! You look fine, great even. I don't believe you have anything wrong with you at all. Shut up!
- Don't worry, if you're not drooling, pissing, shitting or any manner of 'anti social' activities it's ok to be a crip. After all, you look hot you know!
- I'm jealous of the way you look and secretly delighted to hear you've been seriously ill.
- Disabled people look....well, disabled. You don't. Therefore you are not disabled and my vision of the world can remain happily ignorant.
- OMFG! If people who look well can be disabled or sick it could happen to me, or someone I love...cos they look just fine too. OMFG my brain is going to explode and drip steadily from my ears.
- I'm really saddened to hear you've experienced health problems and the only way I can think of to express my empathy is to tell you how wonderful you look.
The reason this is so important is that most disabilities are invisible, which inevitably leads to an overall impression that there aren't many disabled people around so all those on benefits must be fraudsters. This kind of attitude can be so pervasive that I've experienced it on many an occasion from members of the medical profession. So much so that I suspect it's also linked to some of our most basic instincts and senses of how we humans make sense of the world.
It's particularly important to me to minimise the visible effects of Ehlers Danlos Syndrome. Not because I'm embarassed or lacking acceptance, but because it's better for both my physical and mental health not to focus upon it. I don't care if people see me limp, fall or use a wheelchair, and, as happened this afternoon I have no real problems with asking a stranger to help me should I need it*. What's important to me is how I deal with the symptoms of my condition. As EDS has no cure and in a sense no treatment psychological attitude is all. Over the years I've found that the more I smile the better I feel and the less I think about it or mention it the easier it is to deal with. I'll howl over major dislocations or occasionally have a whinge but overall I prefer not to bring it up and just get on with things as best I can.
The unfortunate consequence of that kind of attitude is that people in my real world life** generally have no idea just how extensive my disabilities are. Couple that with an invisible disability and I suspect I'll be hearing "You can't tell by looking" for many a year to come!
*Being rather cute had nothing to do with it!
**I know, and you know that blogging is the real world...but non bloggers just don't get that!
Friday, October 09, 2009
Rather than answer comments individually, for the sake of ease (and my hands) I decided to put it in the form of follow up posts.
I'll start by saying I'm incredibly grateful for everything I receive. If ever I'm feeling a bit sorry for myself I only have to consider how phenomenally lucky I am to be living in a country that considers the financial and social protection of it's most vulnerable citizens to be a duty of the state.
I am ashamed to tell people I'm in receipt of state benefits though. It didn't used to be this way, but the perception that those of us forced to rely upon such help are all lazy, scrounging scumbags has slowly but inexorably become near all pervasive.The main two political parties are almost falling over themselves in their eagerness to ensure the public know they are determined to deal with the problem of idle scroungers with nothing better to do than sit around and watch daytime tv, paid for by decent, honest, hard working tax payer's money. I started this blog largely to try and combat that myth.
Realistically, just like the vast majority of those receiving health related benefits, if I could go out to work I would, after all I didn't go to university to then decide that being on benefits would bring in a far better living than I could ever earn for myself.
So what does the welfare state give me, or you, should you end up in a similar situation? Trust me, I never thought I would.
I receive Income Support. Income Support, not Incapacity Benefit. Important as they are different benefits worth different sums of money and equally importantly different passported benefits. Different benefits, recorded in different ways with different numbers of people in receipt of them. All those people so resoundingly and publicly decried as workshy scroungers, look to Income Support rather than Incapacity Benefit. Why? Simple really. To receive Incapacity Benefit you have to either have been paying National Insurance contributions, or be aged between 16 and 20 (or under 25 if you were in education or training at least three months immediately before turning 20). That's in addition to meeting the various incapacity thresholds themselves. Income Support however is paid to anyone who can't be available for full time work and who doesn't have enough money to live on, typically lone parents, those sick or disabled (who don't qualify for incapacity benefit or do and are lucky enough to be entitled to income support as a top up), students who are also lone parents or disabled, and those in caring roles. Unlike incapacity benefit, if your partner works on average more than 24 hours a week you won't be entitled to any income support.
In addition to the base rate for an adult over 25 which is approximately £59.15, I also receive various premiums because I am considered to be sick and severely disabled thus approximately doubling the basic rate.
I also receive Disability Living Allowance. High rate for mobility, middle rate for care. Disability Living Allowance (DLA) is tax free and non means tested. This is important because it can, perfectly legitimately be claimed by those meeting the criteria who are also working. Its also important because Incapacity Benefit is taxable and those in receipt of it are liable to pay their council tax, whereas Income Support is not taxed and those in receipt of it receive council tax benefit.
The higher rate of the mobility component can, if the recipient chooses, be used to lease (or hire purchase) a car by way of the Motability scheme. I have over the years realised that there is a widespread public misconception that disabled people receive a car from Motability and then the Mobility allowance in addition to that, perhaps to pay for petrol, taxis, or a powered wheelchair. This is not the case, there is one payment in the form of Mobility allowance which can, if the individual chooses be used to lease a car, or purchase a power chair via Motability. It is not enough money to do both. Many disabled people entirely reliant on benefits like myself opt not to use the Motability scheme. This is for various reasons, but speaking for myself I use the money from my mobility allowance to live on, and almost more importantly I am so frightened of the possibility of losing my Mobility allowance on review that I do not dare use the Motability scheme. If that were to happen, I would doubtless be reawarded High rate mobility upon appeal, but as is all too common, I might have to wait up to a year for that to happen, and I could not afford to do that either financially or practically.
High Rate Mobility Allowance means I am exempt from paying vehicle tax. If I used the Motability scheme this would be automatic, but as I don't I have to apply each year. To qualify for free car tax the car must only be used by or for the disabled person, so a married couple could not use one partner's road tax exemption if the other partner was not exempt and for example used the car to commute. In that example they would have to tax the car fully like anyone else.
I receive the Middle rate Care Component of DLA. It is this (or the high rate mobility component) which entitles me to the severe disability premium which is paid onto my income support. Are you all keeping up at the back? DLA is a completely different benefit to incapacity benefit, it is assessed in much greater detail and only awarded to those who meet very tight criteria. My GP was disgusted when he found out I had not been awarded the High rate Care Component. I wasn't surprised. It is worth approximately £20 more per week in DLA and adds another premium to the income support. In a decision typical of the DWP (sorry faceless) I was awarded Middle rate care for the needs they accepted I had during the daytime, but I did not get High rate care because they did not accept those same needs existed during the night. I wish!
David Freud may think it 'ludicrous' that checks are carried out by the individual's GP, but I rather suspect there are a great many GP's out there who would love to have that kind of ability to help their patients instead of being stuck impotently raging against the system, the only power they have to help being a few lines on a form, or perhaps a supporting letter.
In addition to Income Support and DLA I also receive both Housing Benefit and Council Tax Benefit.
Council Tax benefit first because its easier. In my case I receive the full benefit and so do not have to pay any council tax. This is because I am in receipt of Income Support. Were I to be in receipt of Incapacity Benefit like neighbour was, then I would only have part of my council tax paid and have to pay the rest myself. This was one of the reasons neighbour had to move away.
Housing Benefit. I live in privately rented accommodation. Social, or council housing is in crisis throughout the UK. It's simple, after the right to buy introduced by introduced by the Thatcher government people quite understandably took up that right so moving the vast majority of social housing into the private sector. There has never been adequate planning to ensure that the sold housing stock was replenished for the social housing sector so now we have a chronic and desperate shortage of suitable, affordable housing. Everyone in need goes into the same pile, so that nice little bungalow suggested by Vi (and many others in the real world) that the government could provide to help simply doesn't exist. I could, as was suggested by a social worker, move into sheltered housing, but I neither need nor want to live in sheltered accommodation, and certainly have never been able to see why at the age of 28 to be forced into such an environment was in any way in my interests. Even if the social worker did assure me she would do all she could to have the age restriction removed so I would potentially be able to apply to live with the over 65's. That social worker never did understand my lack of gratitude for her most generous offer.
Housing Benefit is of course set at a level considered appropriate to the local area for an average single person, couple, family etc. As far as I have ever been able to work out this level bears no relationship to the true cost of renting, particularly as it factors social rents into its average, regardless of the availability of such properties. My housing benefit is currently paid at approximately £100 per month below the market rent for my home, which in my experience seems about average. I do live in a nice area, but the cost of rent has risen so sharply that I would seriously struggle to find anywhere at a similar cost. I could also perhaps live in a council high rise and hope the lift worked on a regular basis, or perhaps try to negotiate the nightmare of needing a ground floor property, but being under 65, or 55, not having children, having a pet etc. Having previously fought battles with social services and the local authority over care provision and housing I have long since realised that the only result to that is a steep decline in my physical health, and stress levels I am unable to cope with. It is simply easier and more practical to stay where I am.
There is much talk of replacing Housing Benefit with a Local Housing Allowance. This is currently being trialled in a sample of councils and from what I could find, this is an example of the amounts likely to be paid. LHA has been much hyped as a 'good thing' because those in receipt of it who are in cheaper accommodation are entitled to keep the difference without it affecting their other benefits, and those who 'want' more expensive accommodation will have to make up the difference themselves. On a quick calculation to work out the average 4 weekly allowance provided to those in need of a two room property (ie 2 bedrooms) in St Helens (picked randomly from those running the LHA pilot), the total comes to just over £336. A quick search shows an average 2 bed rental property in that area to be around the £395 mark. Never let it be said that I'm cynical, but it seems fairly apparent to me that LHA is just a way to keep paying housing benefits at well below the market rates for rental properties whilst not addressing the real problem of lack of social housing.
Winter Fuel Allowance. Hahahaha, sorry, I need to go away and laugh some more. Right. This is only paid to the over 60's, and by the look of the budget, despite campaigns from various charities there is no change there. In the budget WFA will rise to £250 for over 60's, £400 for the over 80's. Except. If you are in a couple and receive the much hyped Pension Credit you only receive one allowance between you. Ditto for income based jobseekers allowance.
As anyone in receipt of a state pension is eligible, I can only assume that in households where couples are not in receipt of pension credit because they have too high an income that both people receive a winter fuel allowance in what would be a prime example of the injustice and insanity of the benefits system.
As explained here, disabled people under 60 do not receive a winter fuel allowance because they already get disability benefits and premiums on their Income Support. Except if you happen to be on Incapacity Benefit you aren't eligible for those premiums anyway. Oh, and those benefits are worked out, literally to the penny on how much it (supposedly) costs to live, and the additional costs of disability. So that's Mobility Allowance ruled out because that is 'ring fenced' for transport, so long as you don't need to lease both a car and wheelchair. Things like food that doesn't have to be prepared (social services tend to advise a diet of ready meals), any small equipment that your local authority won't cover the cost of, care costs you may have to pay to the local authority or privately because the local authority are rationing care, and many more things I've not listed. That's before (or after) average monthly heating costs higher than a week's benefit for many people.
Hmm. Here comes my cynical side again, but means testing a winter fuel payment is seen as politically unacceptable. Means testing could perhaps provide for those currently said not to need such payments though.
That's the extent of the help provided (to me anyway) by the state. As I said at the start, I am extremely grateful for everything I receive, but, to quote many of my friends "we're not paying so much tax so you can be refused help".
Social Care. Most councils are now rationing this and three quarters only provide support to those whose needs are classed as 'critical' or substantial'. My needs are classed as 'moderate' therefore in my local authority I am no longer entitled to any support. Having said that some of the support is so appalling people are better off without. Cases like this one happen because of the way private companies are paid by social services departments. In the interests of fairness there are many, many superb carers out there who work difficult, demanding jobs for extremely low wages, kept on temporary contracts despite having worked for the same agency for many years. Its cheaper that way. This calculator is a quick way of assessing what help you might receive in certain situations, it's well worth looking at as you may be surprised (or not if you're a regular reader) just how severely disabled people have to be before they qualify for meagre amounts of help.
Equipment. I've previously addressed this in the form of wheelchair provision, but equipment for the home is assessed for and provided by social services Occupational Therapists (OT) rather than OT's employed by the NHS. My experiences are probably quite typical with social services OT's having told me they wouldn't provide a bath lift as I'm too disabled to use it. This is in case of a fall or injury using the equipment which might lead to the local authority being liable. Seemingly denying care and equipment leading to a fall or injury does not incur liability. I can't work out why.
What this does all illustrate quite clearly is just how complex and difficult to navigate the benefits system really is. This morning, whilst a BBC news presenter was interviewing a representative from one of the disability charities about the latest proposed changes to incapacity benefit I heard him describe some of the current tests as 'not much of a a test really, how hard can it be to walk a few hundred yards' Anyone who reads this blog will know that for many people with all manner of different conditions 'walking a few hundred yards' is as big a battle as running a full marathon, but it shows just how all pervasive this attitude of 'how hard can it be' has become.
If I could give just one piece of advice to those politicians who claim they are so determined to sort out the problems of the benefits system it would be this. Until such time you take advice from the true experts, those with a wide range of disabilities and health conditions living day to day within the benefits system, you will continue to fail. Spectacularly.
Wednesday, October 07, 2009
1997 was the first election I was eligible to vote in. As a young student I attended an election night party and cheered along with everyone else when Michael Portillo lost his seat. Oh the irony. That was the moment we all truly felt things had changed, and like the song said, could only get better. Like many, the only government I could remember was a Tory one and how they were hated. At that time, fit and active despite various health problems caused by a condition I didn't know I had, access meant nothing more to me than the ridiculously steep ramp being built outside my university building.
11 years later times have changed. Radically so. 1998 was the year in which I first had personal internet access, a present from an incredibly thoughtful friend to keep me entertained whilst recovering from the first of many surgeries. A mobile phone was still a year away, my own pc further still, consumer goods being proportionally so much more expensive than today.
Ironically, as I saw my own world shrink through increasing disability, the wider world became smaller and more accessible via developing technology. I found information, support and in time whole communities of people just like myself. The disabled community is diverse and to attempt to view us as all the same would be as ridiculous as the suggestion that all football fans are hooligans.
It is not just technology which has altered over the past 11 years. I do not remember ever hearing the term benefit scrounger when I was at university. I do remember the first time I was given that label though. A family member who was struggling to find work after university would regularly inform me that I was scum. Benefit scrounging scum. It was people like me who were preventing him from gaining employment. Don't ask me how that illogical thought process was supposed to work, but as an unemployed graduate no different to any other, this person had bought in to the belief that if one did as they were told and went to university a well paid and interesting job would fall into their lap. Obviously without having to go through the hassle of applying for one. When it became clear that wouldn't happen, unable to find anyone else to hold responsible, they blamed me, held up to represent all those 'nasty benefit scroungers' so bemoaned for a whole variety of wider social problems.
The current climate is one where many disabled people are afraid. The Disability Discrimination Act is toothless, hate crimes against disabled people are on the rise yet not given the recognition or status of other hate crimes, access to services is routinely denied by local authorities, and the vital financial support provided in the form of benefits is being attacked by a government determined to demonise the most vulnerable as they turn their backs on the true issues facing the welfare state.
There is just one major commonality I've found within the disabled community. Political engagement. So many aspects of our lives are affected by even the most minor political changes that without exception the disabled people and their carers whom I have met have all had strong political opinions. Voting is important to this group.
So, just who will disabled people be voting for today? Those with learning difficulties are likely to be ruled out by the inaccessibility of the process and lack of suitable information. Those with physical disabilities are also subject to access issues. In the last general election access to my local polling station was via a muddy track. I collapsed when I arrived, had to be given a chair, water and assisted back out. Those helping me told me that earlier that day they had carried someone from the car to the booths as it was impossible for a wheelchair to access. When I arrived to vote today I was, laughingly, informed I was late. The men who register the votes had expected me earlier in the afternoon. Amongst what they expected to be around a 25% turnout some of us are more noticeable than others. Not necessarily for the right reasons. Postal voting has helped, but for those who have issues with their signature it can be a complicated process, and many, like myself want to feel engaged with the process by physically going to register their vote.
I have no idea who the disabled vote will go to. I just know this. I cannot bring myself to vote for a party so desperate to label the most vulnerable as scum. True equality seems very distant today.
Today is Blogging Against Disablism Day. Click here to view the other posts.
I'm working on a more in depth analysis of the current welfare reforms, specifically what really needs to be done to reform the benefits system in a workable and hopefully equitable fashion. Whilst that is still in draft form there is one very important point I hope to make. Currently the wrong benefits and the wrong groups of people are being targeted.
Disabled people, on the whole, tend not to be the most noticeable group. Wheelchairs, white sticks or window licking are probably the most common symbols people associate with disability, and are all very visible, albeit possibly not to anyone needing a white stick*. The point being that for most people, linked in their mind with disability are visible symbols. The flaw being that the overwhelming majority of disabled people do not have any visible signs of their disability and then there's a whole other group who do but are too busy being unwell/disabled to be out and about much.
It is easy to see how those common misperceptions could lead to a wider and more sinister misconception that there are very few genuinely disabled people and therefore very few genuine benefits claimants compared to the suddenly all too visible Karen Matthews style minority. After all, aren't screaming Chav mum's with fags hanging out their mouths everywhere clearly draining the very life from hard working tax payers?
As someone genuinely reliant upon the welfare state this constant barrage of abuse against benefit claimants is terrifying. The government promise to get a million people off Incapacity Benefit and into work even more so. That promise relies heavily on the assumption that the vast majority of Incapacity Benefit recipients are either workshy, lazy, fraudulent or a bit 'stressed'. An awful lot are claimed to have a 'bad back' too. The frightening bit is that this is just not a true representation of Incapacity Benefit claimants.
Ironically today the children of courage awards were at 10 Downing Street. Tonight footage of an 'assisted suicide' will be shown on television. Why do we recognise and celebrate the achievements of such children or battle to save babies born at 23 weeks whilst refusing to recognise those children grow up to be adults? Adults with disabilities.
This morning my 'surrogate mum' came round to have a bit of a cry. Her beloved husband, a man who served his country for 25 years and worked for many more is dying. He has cerebellar ataxia. This afternoon I met a mum with her bright, happy, beautiful baby girl. Who is about to be diagnosed with Hirschsprung's disease. I've never met anyone who is fraudulently claiming Incapacity Benefit**, but I know large numbers of young adults who are claiming Jobseeker's Allowance and also working. They leave education and as soon as they are able, living at home with their parents, sign on and work for cash in hand. They won't be affected by the current reform's though. All are on New Deal, all are going through the government mandated jobseeking process and all are committing benefit fraud. It's just not called benefit fraud when you're white, middle class and have taxpaying parents, then it's called 'being entitled to it'.
These current 'reforms' insist upon targeting Incapacity Benefit claimants and single mothers and as such are doomed to fail. At great cost to the tax payer. Those job brokers don't come cheap.
Deciding that it is no longer acceptable for society to pay our young people not to work when they leave school, college or university could work out a hell of a lot cheaper though. If any politician has the courage to confront the real issues instead of demonising the most vulnerable in society that is.
I'm not suggesting benefit fraud is not an important issue. It is, of course it is. Reform of the system is overwhelmingly needed, but more so is an honest discussion of the issues. Namely whether or not we as a country wish to continue providing a safety net to the most vulnerable, and assuming that is the case, how we wish it to work. The current 'reforms' are disingenuous at best and downright fraudulent at worst.
*Yes, you are supposed to laugh. Political correctness helped us into this mess
** I am not suggesting that there aren't plenty. Just not the numbers the govt would like you to believe. Single mothers do not receive Incapacity Benefit.
"the principle underlying welfare reform is the principle of the workhouse... you make claiming benefit so degrading and so difficult that people don't want to do it.... that was the principle of the workhouse and that is the principle that the very lovely James Purnell is introducing into welfare"
Diane Abbott 'This Week' 4/12/08
As, the 'very
Income Support rate for single adult over 25: £64.30 per week.
Carer's Allowance : £53.10 per week
Tuesday, October 06, 2009
So after all that hassle, I finally get to the room to meet the jobs broker. I was bored, miserable and fed up when I went to the jobs fair, frankly all common side effects of being without a job, and even though it was a complete and utter waste of time (and bigger waste of money!) I still figured I had nothing to lose by going along to meet this guy.
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.