10/28/2007 06:03:00 pm BenefitScroungingScum 6 Comments

I'm off! Well, at around 3.30 am I will be. I am both very excited (sitting here with a silly grin on my face) and absolutely terrified.

I had to phone round all the various 'booked assistance' points yesterday and today to make sure everything was properly booked, apart from anything else I check in at 5am so it's not like I can phone a few hours before I leave. The airline were really polite and helpful, assuring me the wheelchair assistance is booked at both airports, but the part which really concerns me, the one where I was supposed to be met with a wheelchair at just after 4am at the official car park hasn't been booked. When I spoke to the guy I thought it seemed incredibly quick to to sort everything out, and now I know why..he didn't bother even trying to book any assistance, just told me he was. The girl I spoke to today from the car park bookings insisted they don't/won't arrange assistance and put me through to the concierges who told me they were very busy at that time of night (really?) and so couldn't possibly book any assistance, but if I phone when I get there, 'they'll see what they can do' Right now that isn't sounding much fun to me, and I know it'll be far worse when I'm on my own in the carpark in the middle of the night.

So, worries about getting stuck in a car park in the middle of the night aside, I'm off to try and get some sleep, tomorrow's going to be an amazing day, but a long and very tiring one. Back at the weekend!

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Stupid is as Stupid does

10/26/2007 03:50:00 pm BenefitScroungingScum 7 Comments

Far from the plasma screen and real leather recliner lifestyle so popularly described in many right wing blogs and msm, the reality of life on benefits is life lived on a knife's edge.

Neighbour has been experiencing increasing financial problems which have come to a head today. She has congenital hip problems, was actually born without a hip, no socket or femur bone which in itself you'd think would be painful enough, but when she had her artificial hip put in some years ago the surgeon caused massive nerve damage which no-one since has ever seen fit properly attemp to treat. This of course impacts on her knees, the whole of her pelvis and spine.

As a result of these problems neighbour receives Incapacity Benefit at the long term higher rate. It totals up to around £368 every 4 weeks. She has been receiving the higher rate of the mobility component of Disability Living Allowance (DLA) which is £180 every 4 weeks. Housing Benefit of approximately £82 per week, with a rent of £475 per month. Suffice to say she has over £100 a month shortfall between what housing benefit provide and her actual rent. There are never available council properties for people without children, with disabilities who are under 65, which is why a few years ago a social worker wanted me to be grateful for her efforts to put me into sheltered accomodation for the elderly. I was 28. As neighbour receives Incapacity Benefit she only gets part of her council tax paid for her.

Recently neighbour reapplied for discretionary housing benefit, a top up to housing benefit paid to those in particular need. It's difficult to get and deeply degrading to apply for, you have to justify every penny you spend, supplying receipts for your food shopping etc which, whilst making it utterly humiliating for those genuinely in need, I suspect may make it a fraudsters paradise. Although she had previously been granted this top up payment (but still left with a much smaller shortfall) this time she has been refused. No reason was given, it's just how it goes.

Neighbour phoned the Benefits Enquiry Line for advice. They informed her that she receives too much money to be eligible for Income Support. They also informed her that her DLA mobility should have ended two years ago (she had thought it was a 'lifetime' award, she's only going to get worse after all) and that despite it being completely the fault of the Department of Work and Pensions for continuing to pay her after not sending her out more forms to assess whether she was still entitled to DLA they are very likely to attempt to aggressively pursue her for this money.

Neighbour is terrified. It is near impossible in the area we live in to find properties to rent for under £450 per month, those scant few that appear for less are in areas no-one wants to live in and certainly where a single, disabled woman would feel even more vulnerable, that's if they don't state 'no pets, no smokers, no DSS' like the vast majority of private rentals do. Neighbour is facing a situation where her total income will be under £700 every 4 weeks, with rent of £475, thus leaving her just over £220 to pay council tax, gas, electric, all other utilities. They add up to more than £220 per month despite the fact she has no luxury items. I don't think it unreasonable to count an internet connection as vital when you are lacking in mobility and have to shop for food that way.

This is of course the same neighbour who despite her own problems getting around has been ensuring that I eat and helping me since social services decided that despite witnessing my hip dislocating repeatedly and without trauma, commenting on the obvious amount of pain it caused, recommending I get a community alarm as I would be safer that way, that in their opinion none of that meant I needed any help as I could obviously manage.

I am in many respects luckier than neighbour. I am substantially more disabled, and have care needs as well as mobility. Who'd ever have thought being more disabled or that pissing yourself could ever have an upside? Well, it means I'm entitled to the care component of DLA, although funnily enough those needs I have during the daytime that the DWP granted me middle rate care for bizarrely disappear at night, well according to them they do, and that's so they didn't have to grant me the extra £20 or so a week that giving me higher rate care my GP wrote and told them they should do, would have meant.

Unlike neighbour, I'm not entitled to Incapacity Benefit. Well, not really. The benefits system is wildly complicated you see, so I had to apply for Incapacity Benefit and Income Support so that I could be turned down for Incapacity Benefit and only get the national insurance credits part of it and be granted Income Support. Why can't I get Incapacity Benefit? That's a long story, but to do with not having been diagnosed until I was 28, being told I was lazy and malingering so working multiple part time jobs too poorly paid to reach the NI contributions limit so I don't have enough contributions to entitle me to IB and although I was substantially disabled in my early 20's, I wasn't believed so was determined to work and when I did try to apply for benefits found it rather difficult with a GP who insisted I was an attention seeking liar.
So, unlike neighbour I receive Income Support, which is paid at a higher level because of the premuims granted for my care needs. However, should I ever enter in to a relationship, even with someone on a low income, whoever my partner is will be deemed financially liable for me and all my (means tested) Income Support would stop. A hefty burden on any relationship I'm sure you'll agree, whereas Incapacity Benefit is non means tested and so if neighbour were to be in that situation her IB would continue.

People on Income Support are entitled to have all of their council tax paid for them, despite often having higher incomes than those on Incapacity Benefit. I get around £10 per week more than neighbour in housing benefit, which I am apparently entitled to because my care needs mean I need more space for equipment etc, although just like neighbour I still have around £100 rent shortfall.

Neighbour will have to wait at least a week until the DWP send her out new forms to fill in for Disability Living Allowance. It will take around a week, probably more to fill out the forms correctly, we're not sure where to find the specialist help she needs to do this in our area, services have been cut. Last time I had to reapply for DLA it was approximately a 3 month wait to hear back. In the meantime neighbour has more going out on rent and utilities than she does coming in.

This is what it's really like to live on benefits. No plasma tv's here, just fear and if we don't pull together as friends and a community, as I've experienced in the past, you can get very cold and very hungry, very quickly. Welcome to the real world.

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Meeting Mr Big

10/26/2007 12:06:00 am BenefitScroungingScum 8 Comments

I'd been diagnosed about six months previously and was very wary of the whole idea of relationships after a near miss with a guy who'd turned out to be a total psycho. I hadn't a clue where to start with explaining the concept of EDS to a man or what has always bothered me more, that I'm not able to work because of it and so I entered in to a pact with a mate who was in similar circumstances that we would sign up for a dating site together.

At first it intimidated me, all those bulk emails from men who 'luvved gettin pissed an avin a laff', mixed in with offensive ones from angry abusive men, and the odd ones asking about a price for the weekend so I withdrew as I do whenever I'm scared and, on this occasion, hid the computer in a cupboard so the really scary blokes would have no chance of finding me. Eventually, once I'd worked up the courage to run the gauntlet of the dating site again, I started to find the real emails in amongst all this, and something about his stood out, although not his photo as that made him look a little like an upper class playboy and thankfully nothing like his true gorgeous self.

After my initial reply to him, we emailed back and forth and rapidly progressed to spending hours in the evenings talking about anything and everything via msn. He was highly intelligent, he made me laugh, we had things in common, he seemed kind, interested in things as much as he was interesting and right from the start, even through words on a screen, bizarre though it seemed, I could feel how gentle and compassionate he was. This was to be my first experience of dating as a 'disabled person' with a 'label' and I thought I was ready for it, thought the best thing to do was to tell him about having EDS before we met and then if it was a real issue for him, well, we never had to meet. It didn't seem to be a major problem, not then anyway.

The night we first met in person we went for dinner at a restaurant near my home. I had such butterflies in my tummy waiting for him to arrive, part of me didn't think he'd turn up, part of me wasn't sure I wanted him to. I'd had a really bad few days in the run up to our date and had my painkillers doubled by my GP so I was both unsteady on my feet and fairly floaty. I'd almost fallen over a couple of times before we even got in the door of the restaurant yet I was so insecure and so unused to being shown any kind of assistance willingly or gently that I was taken aback and doubtful when he took my arm to steady me.

I was so busy panicking that when we sat down and I saw his hands shaking I didn't think he might be nervous, I stressed myself into thinking I was on a date with a raging alcoholic. Because that made perfect sense. I couldn't understand what a man like him was doing being seen with someone like me, but it made sense if he had a drink problem. He ordered a G&T. I calmed down a bit whilst panicking at the same time. I was on a date with a complete alki but that was ok, I could get that.

The fact that he didn't have anything else to drink as he was driving ruined my alcoholic theory, but I continued to panic as firstly I couldn't cut up my own food, prompting him to calmly take my plate, cut everything up and hand it back, then I had to keep standing up by the side of our table to try and carry on our conversation throughout the meal as the hard wooden chairs were just too painful for me to sit on. Despite my usual ability to talk increasing amounts of nonsense the more stressed and embarrassed I get, he evidently wasn't too put off as he came back to mine for a cuppa where he had to let both of us in to the house as I couldn't open my own front door. Of course that was unless he was 'one of those perverts with a fetish for disabled girls' like so many people had made sure to tell me he must be.

 I think my inability to get in my own home was probably the point he decided it was safer to take over, throw me out of the kitchen and make the cups of tea himself. We sat on the sofa, drinking them and chatted for hours, kitty #1 firmly planted in between us, like an indignant feline shield, growling with menace if he so much as leant towards me whilst he was talking. Although my wobbling didn't seem to bother him, he spent half his time catching me as I tripped over (I'm always far more unsteady if I'm nervous or excited), his touching me did seem to further enrage the cat who was waiting, poised and ready to pounce, when finally in the wee small hours he did kiss me.

Oh my god what a first kiss it was. Unforgettable. This is a man who, from the first moment he touched me has been able to take my breath away. In every way. As he kissed my neck and my senses reeled, they reeled just a little too much and I coughed, stopped breathing and promptly went a bit blue in front of him. Which is just what you want to boost your ego the first time you ever kiss someone. I was hugely impressed and reassured by his calm as he held my hand and asked if I needed his help as I rearranged things in my throat, put my errant thyroid gland back into place and got my breath back. Despite his outward calm he must've been terrified, I was certainly scared as it had come as such a shock, although it didn't stop him kissing me again once I'd regained some sort of composure. All of which of course I lost as soon as he kissed me. And kissed me. For hours. Everywhere.

I think it was that I was so convinced I would never see him again that made me so uninhibited. I wouldn't admit it to myself until much, much later, but I'd been lost from the first moment, never mind the first kiss, but I've always thought it'd be the last time, he'd realise, find someone better, more suited to being with someone as special as him.

He left in the small hours of the morning, an hour's drive away from home and due in work a few hours later.



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Show Me Heaven

10/21/2007 06:47:00 pm BenefitScroungingScum 2 Comments

It's been a funny old weekend, well I guess any night that involves me drinking alcohol and being described as (without my knowledge at the time) 'the entertainment' for the evening is predictably strange.

A couple of months ago when the firemen came round to apparently fit new smoke alarms, they filled out a form stating I had mobility problems, which eventually led to an assessment and a decision by the er, lets call them special fire people that if I were to burn the house down in my candle obsessed pyromania it wasn't very likely I'd wake up to the smoke alarms and that on my dodgy joints I wouldn't exactly be able to sprint down the stairs to get out. For all these reasons the special fire people decided I needed a type of wireless smoke detector/alarm system that is linked to an alarm box that in any kind of emergency situation I can just press a button and it'll go through to an operator who in theory will speak to me via the box now situated in my bedroom and either check that I'm ok, or if needed call an ambulance or fire engine. Very similar systems are used by the police install in cases of domestic violence.

So friday morning started the chaos when the woman with the alarm part of the system arrived 20 minutes before the time I'd been told she was due to start connecting all this stuff up to the phone line which unusually enters the house in my bedroom. It didn't go smoothly and she was still trying to get it all sorted when the firemen (not the gorgeous ones this time!) turned up at the pre-arranged time to fit the smoke alarms. They may not have been the gorgeous ones, but they were lovely and I'd actually met one of them previously at the jobs fair which we were both agreed was a non sequitur.

For some reason, despite using broadband filters the alarm system just didn't want to connect properly and there was no dial tone when the alarm box was connected to the phone line. Now, I'm not very keen on having this system anyway, instead of making me feel safer, for some reason it just makes me feel more vulnerable and I'm really uncomfortable with the idea of the connecting box being in my bedroom, even though a button has to be pressed to connect up with the call centre, it just feels deeply intrusive and too big brother ish to me and as I wouldn't call for help that way in an emergency I can't really see the point of it all.

It took about an hour of fiddling to try and get it all to work, involving much messing about in my wardrobe by this woman as the phone plugs in there and of course that was where I'd thought I could stash both my bong and newly purchased bag of naughty underwear safely out of the way when I'd panicked and heard her arrive so early.

Fortunately it was all sorted and working by early afternoon as it was neighbour's birthday and I had lots of chasing around to do before we all got together to celebrate in the evening with a takeout and booze. Yes, even me. Apparently, I say apparently as the evening is very fuzzy to me, I was falling over drunk on what neighbour describes as a thimble full of white wine when they started feeding me shots of some cheap imitation Baileys, which already being drunk I just knocked back. I do remember headbanging to what may have been Peter Gabriel (the music had nothing to do with me!) and giving myself whiplash in the kitchen, and I know I showed neighbour what a rabbit was on her pc before I started drinking, causing neighbour chick to get very upset at 'such dirtyness' and 'why would you want to put something the size and shape of a rabbit up your chuff', she was most confused at the concept! Such horrified reactions once again has confirmed my decision that they're all getting rabbits for Christmas...I'll use lovehoney's 3 for 2 offer!

I was so drunk that neighbour had to open my front door for me at around midnight as I just needed my bed, but it turned out I hadn't been too drunk to get hold of her mobile phone. Neighbour has recently been in contact with an old boyfriend and I must've thought it was a good idea to attempt to text this ex for her as she found loads of half written nonsense texts in her drafts and one I did manage to send to him informing him I was her drunk mate and she'd made us listen to Show me Heaven over again (which was their song back in the day) Neighbour hasn't heard from her ex since and says it's all my fault. She's probably right. Big got a load of drunk text nonsense as well, but at least I managed to tell him he had a big cock and that I was being listened to peter gabriel. For some unknown reason. Peter bloody Gabriel aside this would be the reason I don't really drink, all I have to do is sniff the stuff and I'm falling over which has caused some pretty humiliating incidents in the past, and meant I spent all friday night trying to pour water down my neck while the bedroom span. I'd forgotten how horrible hangovers are.

Still, an improvement on saturday night when the cat woke me up at 4am puking on my bed.

As I said, its been a funny old weekend.


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Routine

10/19/2007 04:07:00 pm BenefitScroungingScum 4 Comments


It occurred to me some time back to photograph all the items I receive on prescription so people could see an example of the typical routine work of the NHS. As I've mentioned before I have to order all the items I need at the pharmacy, who then take the prescriptions to my GP's practice for me, and collect them again so that in theory I only have to go back to the pharmacy to collect the filled prescription. In theory. In practice what tends to happen is that like today I go to the pharmacy and some of the items will be there but despite having been ticked on the prescription refills, double checked by the pharmacist and pointed out to the receptionists at the GP practice by the very experienced pharmacy technician who is well used to managing my medication the painkillers I take which are controlled drugs will inevitably be missing. Sometimes this is because a prescription for controlled drugs has to be filled in by hand and therefore takes longer than other items, but usually for some reason we've never discovered it seems to be forgotten and so requires multiple trips to chase it up every month. I once worked out that I must spend around 4 hours every month chasing up medication which whilst I'm not working is no more than a drag but when I did work, even though it was only part time caused huge problems trying to organise all this.

I went to my GP practice after I'd been to the pharmacy to collect the letters I need to fly, but when I checked them although the attached list of medication was accurate the dosage of medication written in the letter was incorrect, probably a typing error. I wasn't sure whether this would be a problem or not, but the receptionist felt it would be better for it to be altered rather than the airline having a problem with it and refusing to allow me to take vital medication on to the plane. I know this is a security requirement for the airlines but I can't help feeling this just puts additional pressures on GP's already overburdened with paperwork, particularly when there doesn't seem to be any clear guidance on what is and isn't needed. A copy of my prescriptions isn't adequate, but we couldn't find any details on what needed to be in the letter. As I'm flying twice, we also couldn't find out whether I could take a photocopy of a letter for the second flight so my GP has written two separate letters addressed to each airline and now both of these need altering. Work like this is not within the GP contract and I feel the £10 I'm being charged for this is more than generous.

Whilst I was at the surgery I also re-ordered the prescription for my painkillers as it simply hadn't gone through on the system, and was made an appointment for next week with my own GP. I've had a minor fungal infection on my back for weeks which has got worse instead of better with the shampoo the pharmacist gave me to treat it. I suspect that the real problem is that I've tried to wash my back with one of those long handled brush things and as my skin is fragile I've actually managed to cut and graze the whole of my back.

This is the kind of routine work that GP's, practice nurses, pharmacists and all sorts of other vital members of the NHS do all day every day and although as I've highlighted there are problems with the system, really they are minor administrative problems which could be easily sorted out. For all it's problems the NHS is something we should be proud of in this country, it provides vital medication for millions of people every day who in other countries would not be able to access such privileges as regular, routine, free prescriptions and access to their own GP within days for minor problems.

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Lil Star

10/18/2007 05:56:00 pm BenefitScroungingScum 2 Comments



I had one of those conversations today that makes you remember just how precious and short life really is. It was few years ago, soon after I met Big, that life became very difficult for me. Not long diagnosed I was very unwell and only just learning how to cope with EDS, my already difficult family situation broke down completely, and I was deeply in debt. As they have a habit of doing, things reached a breaking point where I simply didn't know how I was going to manage, I was so badly in debt I couldn't afford basics like food or heating, and in utter desperation I wrote asking for advice on a support group. Although lots of people read my post, only one or two replied, most I think not knowing what to say, and being intimidated by the situation I was in.

One person however went to huge lengths to help me. She spent hours tracking down an email address and then phone number for me, having realised from what I'd said just how close to breaking I really was. Later that same day she phoned me, this woman I'd never met, and never spoken to and spent hours on the phone, listening while I talked through how difficult things were and trying to find ways to help. She lived hundreds of miles away from me, but discovered her own parents lived within half an hours drive of me. Within days her elderly parents were at my house with a boot full of shopping they'd bought for me. She even gave me some of her own money, a very small amount, but at the time a fortune to me. She really is a Star this lady.

Over these past three years life has changed a great deal from the time I thought I wouldn't get through. Thanks to Star I found out I could get help with my debt problem and starting buying food instead of giving everything to the bank. I made sure that I paid it forward and when the opportunity arose I gave someone else in crisis a small amount of money just as had been done for me. I've managed to turn my life around, supported all the way by Star.

As my life has improved, things have gone steadily downhill for Star. She's been really poorly over the past couple of years. At first she had an appalling and disinterested GP who ignored her urgent symptoms for about 12 months, with that attitude so familiar to those of us with EDS, that there was nothing wrong, like she was still attention seeking despite her own diagnosis by world respected experts. Fortunately a new and excellent GP came along, and since that time Star has been cared for by the very best medical teams, although for months despite extensive tests none of the doctors had could find what was wrong, just knowing that she was very unwell and losing weight rapidly. Eventually they decided she had endocarditis, probably caused by some dental treatment a year or so previously when she'd not been given any prophylactic antibiotics. Star also has EDS, and like many people with EDS has mitral valve prolapse, usually nothing much to worry about but she's been unlucky. Star remained in hospital for months, being treated with all different kinds of antibiotics as she had various allergic reactions and still not getting better. Eventually the doctors decided that the infection in her heart couldn't be the primary infection as she just wasn't getting better and finally found out she had biliary sepsis. They suspect this has been caused by the internal laxity of her bile ducts. After months of IV antibiotic treatment Star was well enough to have an operation to put a tube into her stomach so that she'd be fed through a peg tube at night and could go home.

Star had just been told that she might need a liver transplant when she was diagnosed with breast cancer.

She's had her mastectomy and come through that much better than anyone expected. Today she read me the letters her doctors have copied her into putting the situation into black and white. The cancer had already spread to 4 out of the 9 lymph glands they biopsied. It is not responsive to Herceptin or any hormonal kind of treatments. She has a 31% chance of survival in 10 years, which increases to 54% if she has chemotherapy. Problem is that she is already so unwell that chemotherapy may well kill her. So could the biliary sepsis mind.

There is a plan in place, proving how superb the NHS can be when it works well, teams of consultants at different hospitals working together to plan an attempt to manage chemotherapy and treatment for biliary sepsis at the same time, organising plans for A&E admission via ambulance and immediate transfer to specialist hospital should her temperature rise by a degree and not drop within an hour. Professors talking to each other in an attempts to find some method of treatment that may help. There is, not surprisingly, no precedent to be found for giving chemotherapy to a patient with EDS, a peg tube and existing biliary sepsis.

Star is 47. Her youngest children are 13 and 16. Today we talked about whether she would see Christmas.

Life really is too short, we all know that, but I know that if I can live mine taking a leaf out of Star's book, always going that extra distance to help others, paying it forward, with a wicked laugh and a potty mouth, well, then it'll be a life lived half as well as hers has been so far.


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Catchin' up

10/16/2007 06:54:00 pm BenefitScroungingScum 5 Comments

Time in that way it has of always seeming to drag impossibly slowly or race by so fast it's gone before you notice, seems to be going at a galloping pace this week. Along with the leaves from the trees I don't know where the days are disappearing to.

Yesterday I spent a not unpleasant afternoon with a nice man wrapping my feet in warm, wet cloths and then washing them clean. I can think of far worse to spend an afternoon. Before anyone gets too excited, I had a hospital appointment, this time podiatry. They'd run out of the type of foot moulds you stand on, so the podiatrist had to take impressions of my feet the 'old fashioned' way, by making little plaster castings of them. This does have a more valid reason than the NHS suddenly deciding to fund men to wash my feet, after all not even social services will fund that, it was so I can get some properly fitted orthotics to hopefully help me walk a bit better. Foot washing aside, the podiatrist was great, and it was nice to see someone who was so interested in EDS and had heard of it, rather than asking me what it was. He even made sure he had the name and hospital of the main specialist for the north of England so that he could let any other patients who might need those details know.

Although I've not been up to anything exciting, Ziggy has been having a fine old time with the girls of late. He's been on a few dates with Pixie girl who he met when we went out to the citycentre and so far so so. However, he had to wriggle out of a relationship with a girl he'd not wanted to go out with in the first place before he went on his first date with Pixie girl, a girl who's since driven him crackers with her obsessive phoning, texting and come home from her first term at university to show him her new tongue piercing. As you'd expect for a 21 year old man, he didn't turn down the offer to try it out. Now, what Ziggy doesn't know that I know is in the middle of all that he finally bedded his best friend Zelda, who of course has a rather more serious relationship of her own lurching from crisis to crisis on a daily basis. Somewhere in amongst all this Ziggy's lesbian ex-girlfriend has also been to pay him a booty call in the past week or so...it's no wonder the boy's knackered!

Another neighbour, lets call this one Ernie, has been doing some work in the house for me (its quite the community round here) and has finally finished boxing in the, previously open plan stairs. I'm really pleased about this as the only radiator in the open plan living room is right under the stairs, and up until now the heat just poured up through the gaps in the stairs. This was especially annoying as there's also no radiator in the kitchen and that's open plan too, so just adding to the problem. Excitingly, oldest friend's disgusting old sofa was collected at the weekend, having finally been sold on ebay. Its strange, I've been living in this house for 4 years, but finally now that sofa has gone its starting to feel at least a little like my home.

There are still all sorts of extra things I have to do to get organised to go and see Big. Today I had to go to the pharmacy and order all my medications ahead of the time I usually would to make sure I have enough to take with me. Yesterday I called in at my GP practice to see about the letters I need to fly with medication. This for me is particularly important because the painkillers I take are a controlled drug. My GP has apparently written two separate letters and is charging me £10 which seems fair enough. However the receptionist couldn't find the letters or a prescription whilst I was there so I will have to go back again. It takes me far longer to get through day to day tasks like these as even on my best days pensioners sprint past me, so with all the little things that make up the day cluttering up time, they've sprinted past without blogging.

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Never Neverland

10/11/2007 03:27:00 pm BenefitScroungingScum 14 Comments

On Tuesday I asked people for their feelings about the ethical debate surrounding Alison Thorpe's wishes for her 15 year old daughter Katie to have a hysterectomy. Another mother has followed suit and is asking for doctors at Alder Hey Hospital in Liverpool to perform a hysterectomy on her 9 year old daughter Olivia. I was very specific when I asked people how they felt about this, and now it's time to think.

This issue first came to worldwide attention early this year with the case of Ashley X, the 9 year old American girl with static encephalopathy who underwent radical and non-essential surgery in 2004 at the wishes of her parents. A hysterectomy was performed upon her, her breast buds were removed and she was given hormone injections to stunt her growth.

Since then the Washington Protection and Advocacy System (WPAS) has ruled that Ashley's rights were violated by Seattle Children's Hospital who performed the surgery without a court order. The executive director of WPAS said that "Washington law specifically prohibits the sterilisation of minors with developmental disabilities without zealous advocacy on their behalf and court approval", but despite this the group have no plans to sue. In May 2007, Seattle Children's Hospital admitted they did break state law by allowing the surgery to proceed without first having a court review the proposed treatment. The hospital blames the error on "internal miscommunication"

On September 30th 2007 Dr Daniel Gunther the paediatric endocrinologist at Children's Hospital and Regional Medical Center in Seattle and associate professor of paediatrics at the University of Washington who along with his colleague Dr. Douglas S. Diekema performed the illegal surgery on Ashley X was found dead in his car. His cause of death listed as toxic asphyxia from inhaling car exhaust. Ashley's family thanked Dr Gunther on their blog back in March 2007, commending him for his "courage" and "unwavering support" They went on to say "It is our, and Ashley’s luck, that we knocked on the right door". I wonder, in the light of subsequent events, do Dr Gunther's family feel that way?

At the time the Ashley X debate was raging earlier in the year, one of the differences highlighted between the UK and the USA was that such a situation could never occur without legal approval, which is precisely what the doctors at St John's Hospital in Chelmsford consulted by Alison Thorpe are seeking. This is one of the few positives I can find in this situation as we definitely don't need another death arising from this sorry mess.

So what exactly does this mess consist of, and how have we got here? Alison Thorpe, and now Kim Walker are both asking doctors to perform hysterectomies on their respective daughters, Katie and Olivia, both mothers claiming that they want to save their daughters from the "distress" and "pain" of menstruation. Both of the mothers have ruled out other options such as the contraceptive implant, or the contraceptive pill or injection both citing concerns about thrombosis due to the girls lack of mobility, although other options which are just as effective as sterilisation, but reversible have recently been recommended by specialist doctors such as Paul Hardiman at the Royal Free and University College London for a patient in similar circumstances. Both mothers insist that only they are able to make this decision for their daughters, stating concerns about their daughters lack of dignity, inability to understand menstruation, to keep it private or discreet, Kim Walker going so far as to say;

"I can't see why they should have an opinion on it unless they are going through the same thing themselves."

Well I think that's where Mrs Walker is wrong. I think its absolutely vital each and every one of us does have an opinion on this, and everything else about disability. We're buried under a pile of politically correct nonsense which frightens everyone into silence and enables a level of discrimination and abuse to go on against a vast sector of society which if it were racist, sexist or homophobic would provoke outrage, but because its disablist no-one even notices.

Those in favour of the radical and medically unnecessary surgeries proposed for Katie and Olivia suggest that as these girls will never be able go on to have children that to take away their wombs won't matter. That is of course true for these two girls, their disability is too profound for them to experience motherhood, but there is all too often a wanton disregard for the fertility of women with disabilities, particularly in the medical profession who often make dangerous wrong assumptions about how little a disabled person's life must be worth. From their perspective. Obviously. As Simone Aspis of the United Kingdom Disabled People's Council herself said
“We know of plenty of disabled people both with physical impairments and learning difficulties who give birth to their children and are great parents. This is nothing more than eugenics and abuse of Katie’s human rights.”

The argument keeps cropping up by both these mothers and doctors trying to justify the removal of these girl's wombs that as they will not be able to understand menstruation or keep it private that it will be deeply distressing for them. Why? Is this not more to do with the distress or embarrassment the rest of us might feel rather than Katie or Olivia or any other disabled young woman likely to be subjected to this kind of abuse if we the UK follow down the path of an American surgery already deemed to have been illegal and, who knows, possibly responsible for one death. Both Katie and Olivia are already doubly incontinent and unable to manage their own bodily functions, why should menstruation be any different for them? To deny these girls the right to progress in the same way as their peers do, and to experience an event which will take them into womanhood rather than keeping them in an artificially created Neverland seems to me rather more for the convenience of society and as such obscene. Alison Thorpe talks about the activities which used to bring Katie joy, which apparently she is now becoming too big for, such as horse riding as a justification for this procedure, but at no point does anyone seem to have the courage to mention sexual pleasure. Neither of these girls will be able to experience the joys of a first date, and they are not capable of giving their consent to sex in any form, but that does not mean that they should be robbed of their ability to feel sexual pleasure, after all just because the idea of profoundly disabled people enjoying sexual pleasure is distasteful to some does not mean it is not as much their right as everyone else's. That it is not expressed in the 'typical' form does not mean it should be taken away.

That for me is the crux of this issue. The debate rages in the media, mainly focusing on the difficulties experienced by these two mothers in caring for their daughters. Quite right too. The government should be ashamed. Deeply ashamed. Carer's allowance is £48.65 a week. Social care is in meltdown. Good social workers a laughable urban myth. Equipment sold at vastly inflated prices to the most vulnerable in society. Neither of our main political parties are proposing anything realistic to change the lives of disabled people in a positive way that doesn't engender fear. Even more disgraceful as both the leaders are fathers of disabled children, and while they fight on about how best to slash the costs of the welfare bill attacking the most vulnerable and hoping to ignore the 'can work, won't work' sector of society, people like Alison Thorpe and Kim Walker look to hysterectomies as an answer to their problems, because at the end of the day, really it is their problem. Both these girls could be given alternative forms of treatment, but even I, so staunchly opposed to the choices they've made for their daughters understand why they've made it. Who doesn't? Once these girls move into the care of adult social services it will become even more difficult to extract care packages and equipment from their respective local authorities. Bigger and heavier means more difficult to lift, more difficult to care for, and brutally, disabled adults aren't all cute and deserving of sympathy from the public in the way that disabled kiddies are.

I understand the dilemma these two women face, I really do, I just think that performing this surgery will be the back door back in to the eugenics policies that were once accepted for disabled people, and what the media and wider public seem to have misunderstood is not just that disabled people are of equal value and equal citizens to everyone else, but that people with disabilities have something fantastically important to teach society. Start to mess with that and the lesson disappears, and it's not one we can afford to lose. For people with disabilities as profound as Katie and Olivia radiate love and joy of the purest kind around them, and that's something we're sorely lacking in this day and age. It's also priceless.

So, lets not forget, however much sympathy we feel for both these mothers, however much we might feel that anything that makes their lives easier can only be a good thing, already one child is forever a child, the parts of her body that would make her a woman forever removed without her consent in a surgery only judged illegal once it was too late, by an agency supposed to protect her but not be taking legal action against the hospital and a man is dead. A doctor who, whatever he did, whatever we think of it must've thought he was doing his very best for his patient, and who may have found the actual consequences just too much to bear. Peter Pan and Neverland it ain't.


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Fear of Flying

10/10/2007 05:36:00 pm BenefitScroungingScum 8 Comments

Every time I think I feel back to normal, or at least what passes for normal in my world I go to do something and end up with the world spinning a bit blurrily away from me and my joints feeling strangely stiff and full of acid, fingers, toes, arms and legs strangely disconnected from me, there when look at them, but feeling wrong, as though they belong to some stranger, instead of my own.

Feeling that way has made the task of finding and booking flights to two different destinations even more taxing than it would anyway have been. It's been a few years since I've been on a plane, and the last experience I had wasn't particularly pleasant, so the idea of flying again has proved very daunting to me.

Back in august I was amazed and delighted when I was asked to be 'guide parent' to one of the children of my oldest friend. Actually, he was my first serious boyfriend, but that just makes it sound weird. Particularly as I live in his house. Yep, not doing myself any favours here. Though he definitely wasn't when he said, "What, Not at the "would you like to come to another country with me to name one of my exes children" stage yet ... ? ;)" about Roland. When put like that, it all sounds very strange, but I see this as the positive side of modern families. Oldest friend and I were wrong for each other in a romantic sense, but as friends we have a powerful bond, after all I was still at school when we met, and we've seen each other through the darkest times of our lives. I could not have been happier for him when he met his current partner and then when they had their first child, followed just 11 months later by their second! The only thing that would make me happier is to see them get married.

When Oldest Friend and his partner asked me to be the guide parent, they weren't sure if I would be able to say yes, as they weren't sure whether I would feel up to, or even be allowed to fly. This is partly because over the past few years I've been so unwell, and partly because the last time I was supposed to go away was to meet Oldest Friend in Amsterdam back before I was diagnosed. That time I wasn't able to go, as although I managed to find travel insurance to cover the pre existing conditions I knew I had at the time without any difficulty, the same GP who told me I was lying because I enjoyed the attention and that there was nothing wrong with me physically, at this time said there was far too high a risk of my falling over and refused to sigh the insurance form. As he also refused to put his reason for refusing to sign my insurance in writing as per the airline's requirements for refunds that meant Oldest Friend (who'd bought the ticket as a present) was still charged full price for the flight and I couldn't go. Then there was the flight to London to see a specialist when, despite having spent days arranging assistance at every step of the journey and checking every stage of it the day before I flew, none of it turned up and the stewardess on one flight loudly referred to the disabled passengers as "the wheelchairs". Then argued with me and insisted I couldn't have help as I wasn't elderly and therefore not a priority.

So, to say I'm nervous about flying again would be an understatement. When I first found out about the guide parent thing I looked at Ryan air flights, saw their policy about disabled people and apart from my anger, I panicked. I decided that I didn't feel safe to fly by myself on Ryan air, and would have to pay the cost of a 'full price' airline to try and avoid such policies. I was still very anxious about it all though. Airports are such vast places, the distances involved just getting from drop off points to initial help desks often more than the distance I can walk. Thinking about it makes me feel very vulnerable, and very disabled which I find even more difficult after working so hard to try and gain control.

I had just about decided that the timing and distance involved in going to be a guide parent made it impossible for me when Siobhan offered to come. Initially Roland thought he might be able to come, as we've settled into a comfortable friendship, but couldn't get time off work. Siobhan's offer meant that my fears of travelling alone disappeared and I grabbed the chance to buy 1p flights on Ryanair. I've paid for both our flights, well taxes and charges really, as it it seems only fair, and its still costing me less than half the price I would have had to pay if I'd gone on my own.

I've sorted some travel insurance, pre existing condition an all, with help from this site. I'd been to see my GP before I booked any flights to check there weren't any problems preventing me from flying, and following instructions from my pharmacist I've been to the practice today to ask about a letter I apparently need to fly with medication. This is apparently becoming some sort of standard requirement. I've yet to find out whether I can take a photocopy of the letter the second time or whether I will have to get two letters. I am likely to be charged by my GP for this.

According to Ryanair's own rules I phoned them on the same day I booked the tickets to let them know that as a person who happens to have a disability I wanted to travel on one of their flights. A very pleasant lady booked a wheelchair for me at the airport, and any other potential assistance needed, such as a lift on and off the plane if its to be boarded by steps. Her pleasantness didn't really make up for the humiliation of having to check whether I was allowed on the flight, or whether the disability maximum had already been reached, and of course the hassle of trying to get through to the local reservation centre then on a number charged at 10p a minute.

There's just a few things left to sort out. Travel to and from the airports, maybe parking, oh and the really tricky bit, assistance for the flights I'm taking on my own. I did say two different destinations after all. Before I go to be a guide parent I'm going to see Big. How exciting is that?!

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Impacts

10/09/2007 03:58:00 pm BenefitScroungingScum 4 Comments

Neighbour's generosity has meant that I've done little apart from flop about for the past week. The sore throat bug is a nothing, the impact any such lurgy has on my joints and overall condition much more difficult to deal with.

Still, I don't need to leave the house to find drama, or it me. There is much to report on the subject of air travel, families and Big. Always Big.

Until then, while I'm trying to get some feeling back into my hands, I'm sure everyone has a feeling about this. Mine are primarily horror, dismay and deep sorrow.

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Generosity!

10/02/2007 07:04:00 pm BenefitScroungingScum 6 Comments

Ugh. Neighbour, generous in everything she does has shared her germs with me. I've caught whatever the latest lurgy is and I feel lousy. I'm going to bed.

Hello to the new people and thanks for all the lovely comments, I'll be back to read and reply properly once I've made neighbour take back her unwanted gift. Humph. Bed.


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Nice One Dave!

10/01/2007 06:13:00 pm BenefitScroungingScum 1 Comments

On the same day a charity set up to help soldiers disabled in the course of serving their country has to beg for funds, David Cameron, himself the father of a profoundly disabled child admits Conservative policy will be to use private companies to force people off Incapacity benefit and into work.

That's nice isn't it, there was I naively thinking that one of the best ways to judge a society is by how it treats its most vulnerable. That'll be us vulnerable rightly fucked in every direction then. Not the nice kind of fucked either. Oh no, it has to be the soulless, compassionless, totally devoid of any understanding of reality kind. I hate that kind almost as much as I hate Gordon Brown, and that's with a passion. His lack of courage and desperate need to deny who he really is make me sick.

Although I may naturally lean to the left, and often think David Cameron picked the wrong party in his desperate desire to mould himself in Blair's image and claw for power, still something in me had hoped for better from him than to follow blindly along the path of the much feared and despised Blair Brown Welfare Reform Act.

I should've known better. Inheritance tax is obviously far more important a thing to reduce than any proper recognition of the true costs of the welfare bill, or reasons why. Especially when you're Shadow Chancellor but appear to be even worse at maths than I am. Another vote for both private and selective education there I'd say.

Now here's a thought for both of these fathers of disabled children safely cushioned by their power, status and cash. Why don't you try addressing the real issues surrounding welfare costs? Like say, the whole perfectly fit and healthy but just can't be arsed to work and why should I while you pay my benefits thing. No? 'Shut that woman up, it's too difficult, we're not going to talk about that' you say. That's what I thought.

In that case, until you listen to those of us really living with disabilities and nothing but welfare benefits between us and the street why don't you fuck off and leave me alone, because really, my life is quite hard enough as it is without you adding to it.

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