Thursday, July 31, 2008

Baring All

The debate about Britain's Missing Top model continues to rage even after the winner was announced as Kelly Knox. The main issues getting people wound up seem to be the type of disability and confusion over whether the winner should be a role model and spokesperson or model first and foremost.

My experience of modelling was actually directly
related to becoming disabled. After I returned from the USA nursing the first of many failed shoulder surgeries and years before I would be diagnosed with Ehlers Danlos Syndrome I found myself in the position of being unable to work full time but desperate not to claim benefits and so add to my then status as lazy malingerer. I worked a variety of part time jobs over the years but all were incredibly poorly paid and when people suggested I work as a glamour model to earn some extra cash I eventually decided there was no reason why I shouldn't.

It was also years before I recognised myself as having a disability which leads me to wonder whether some of the problems relating to the acceptance of disability in the modelling industry have more to do with the label than anything else. As I didn't recognise myself as disabled I never used the label when talking to photographers but I did always explain not only the problems I had with my shoulder but that I tired easily and was in constant pain. It wasn't an issue for any photographer I worked with, but I suspect most of them would have shied away had I declared myself as 'disabled' despite there being no difference in the issues created.

I didn't think of it as needing adaptations, there were just positions I could hold, and those I couldn't. It was always something worked around by myself and the photographer, my yet to be labelled hypermobility compensating by providing an ability to move into more poses than it prevented.

Glamour modelling was never a career for me, in my mid 20's by the time I started it was simply an easy way on occasion of earning a bit of extra cash for myself that fitted in with the random nature of NHS appointments. The experience of learning to ask for and accept assistance for personal care meant I rapidly lost any self consciousness I might once have had about my body after years of being bullied for my appearance and gave me the confidence I needed to model nude.



Tuesday, July 29, 2008

Britain's Missing Top Model -The Winner

In a surprise decision Kelly Knox won. The judges seemed more confused than ever as to what the competition was about, but as they placed so much importance on the winner being a role model I feel they made the wrong decision. Kelly Knox may be the better photographic model, but Sophie was right, she just isn't passionate enough about changing the way people view disability.

However if this is anything like Pop x-wannabe it'll be Sophie we all remember not Kelly.

Broken Bureaucracy

After my initial freak out over the maggots earlier today (dislocated/broken joints don't faze me, but show me an insect and I'll dislocate anything/everything in my desire to flee!) I calmed down, sprayed inside the bin with Raid and phoned the council. Well, phoned the council and then left the phone on speaker phone for 15 minutes while I waited for a human.

The mention of maggots was clearly nothing new to the poor bin lady, but I managed to sort out a new wheelie bin to be delivered within 5 working days as not only were the maggots inside but a whole variety of life forms were breeding in the permanent puddle on the caved in lid. The council offer a service to assist certain groups of people with their bins, they will come and collect from the house rather than the street if you are deemed unable to move the bin yourself.

Sounds great doesn't it? I, probably very naively assumed that I would just have to let the council know my problems, and then perhaps send a copy of my DLA (disability living allowance) award to 'prove' to the council that I have a certain level of disability. Or perhaps that they could check their own records, as there is still a disabled register, although I'm personally not on it. All of course far too simple and straightforward for a country currently drowning under the weight of bureaucracy. Instead the council send out a form, which the individual fills in explaining why they need this assistance, whether that be because they are disabled, elderly, currently convalescing (a term I've not heard used elsewhere for many years) or injured temporarily. After the form is received by the council they then send out an inspector (yes really!) who judges whether or not the individual is entitled to bin help.

Think of all that money they can save by such a drawn out process! Relying on people to die or recover before getting assistance must save oooh, almost as much as a salary for a full time Bin Nazi. No wonder council tax is so high, the council are working hard on their priorities of removing help to the vulnerable by spending the money on needless inspectors.

It should beggar belief, but sadly it doesn't. This kind of shameful waste is repeated endlessly across the entire public sector. The real maggots aren't in my bin, they're far too busy being busy working for the government.

Bleuch!

Ugh. Which so does not cover the overwhelming desire I currently have to vomit. Ugh. And a bit more. I had suspected that the ridiculous amount of flies entering the house this year was to do with the wheelie bins, but having just been to put something in the wheelie bin and found it swarming with maggots I'm now prepared to put money on it.
Fortnightly collections during this weather are insane, in 2006 when the weather was consistently much hotter than now there weren't these problems.
Does anyone know how to deal with this problem once the bins have been emptied? Particularly how a mobility impaired person can deal with it?
Excuse me, I'm off to be sick now whilst the local children play with the bins.

Sunday, July 27, 2008

How Can You Take It Easy When You're Already Taking It Easy?

I've just discovered a very new and very promising blog called How Can You Take It Easy When You're Already Taking It Easy, written by someone with a traumatic brain injury and I suspect a far worse experience of the benefits system than I.

Read it and weep.

Heaven From Hell


After all the examples of bad practice I've highlighted on this blog, it's a relief to finally be able write about good practice in action.

Last night with Ziggy, his girlfriend BendyToo and her dad I went to watch Australian Pink Floyd at the newly constructed Echo Arena in Liverpool. The band were amazing, but the venue was e
ven more impressive.

I'm so used to having to arrange access for myself that it was really lovely to have someone else do that for me. I was incredibly touched by the efforts made to obtain accessible tickets b
y BendyToo's dad. When I've tried to book tickets for similar events in the past there has tended to be a limit on the number of people able to accompany a disabled person in the restricted seating area, but this venue is newly built and boasts it's full DDA compliance so there were seats for disabled people and their friends in abundance. We got the impression that had we wanted to book a party of a dozen with only one disabled member into the accessible seating it would have been no problem.

There were loads of disabled parking spaces, and an easy route up to the venue by lift. Once we arrived we were directed in to the accessible seating area, all on the same level and we were all delighted to see we had some of the best seats in the place, along with lots of room to move around.

The one minor disappointment was the disabled loos, although there was a well placed large mirror this time, actually at wheelchair height, finally a place to reapply my lip gloss! The only downside was that although perfectly DDA compliant, that seems to mean an awfully small space to try and turn a wheelchair around and to transfer from chair to toilet. Other than that it was all absolutely wonderful and very well thought out.

The wonderful access meant that we could all relax and enjoy the show, the band were fantastic and a great night was had by all.


Thursday, July 24, 2008

Britain's Missing Top Model-Episode 4 The Battle For Visibility

There were two clear themes to this week's episode of Britain's Missing Top Model, the battle between Sophie and Jess, and the battle between visible and invisible disabilities.

The assignment was filming a TV advert for Pang's ice cream and a photo shoot, both with male models. During drinks with all the girls and male models the subject of partners comes up. Immediately Sophie points to Jess and with a knowing look at the boys, just says "lesbian". She then goes on to make further comments about Jess's sexuality after which Jessica can be heard asking "who is this Sophie today?" and that she doesn't like her. Understandable as in that moment Sophie comes across like a school yard bully. Later the situation between the two girls degenerates whilst out for dinner with Sophie attacking Jessica after she tries to explain her disability.

Most of the problems the other 3 girls have with Jessica seem to stem from a lack of understanding of her disability. Jessica, like many people who've grown up with a disability but not the diagnosis to match it struggles with the issues left over from a lifetime of disbelief, and often seems to feel she has to justify herself. Whilst Jessica could perhaps benefit from a more positive self attitude the clear disdain for her from Kelly Knox and Sophie shows more about their attitude towards their own identities as disabled women than it ever could Jessica's.

My money's on Sophie to win, even if I don't think she'll make much of a role model. Asking for fair treatment and understanding from the able bodied world means nothing if disabled people can't show it within our own.


Monday, July 21, 2008

Nothing Ever Happens

Frank Field has pointed out the proposals announced today for welfare reform are unlikely to 'see the light of day' and won't make any difference if they do.
I couldn't agree more with his latter point, though not being in possession of the same income as an MP I'm still worried about the former.

The proposed reforms rely heavily on the Pathways programme and use of job brokers as well as the assumption that there really are the mythical 1 million to remove from benefits, the flaws of both have been looked at many times on this blog, and by other more esteemed bloggers than yours truly.

Frankly the whole thing has left me more depressed about the problems facing the benefits system than ever.

Nicely does it!

On the same day reforms of the benefits system are announced I am not surprised to see a separate announcement, namely that NICE want to limit the medications needed by those with rheumatoid arthritis.

We've been told that these welfare cuts reforms will apply to all but the most sick and disabled claimants so I can only assume that reducing access to vital medications is part of the overall masterplan to help achieve that.

Thursday, July 17, 2008

Go Oscar, Go!

Whilst it is disappointing that Oscar Pistorius's times were not fast enough to qualify for the individual 400m the real issue is once again the discriminatory and unpleasant attitude of the IAFF who state they would prefer Pistorius not to be selected for the 4x400m relay for "reasons of safety"

Shame on them! Go Oscar Go!

Tuesday, July 15, 2008

Britain's Missing Top Model - Episode 3

Judges, can you say brain injury? No? Anyone? B r a i n I n j u r y. There you go, not too difficult after all is it. Funny thing about the brain, it does all sorts, some things we understand, some we are yet to discover, but I'm fairly confident I don't need a medical degree to state that personality comes from the brain. Here's another funny thing. Brain injuries don't just impact on the physical part of us. They affect the mental part as well in a way that most people would like to pretend doesn't happen. Which is why it was so disturbing to see an all out attack on the personality and behaviours of someone who's experienced a serious brain injury. Whilst the behaviours in question may have been inappropriate they paled to a minor social transgression in the fervent light of a judge driven by his own personal prejudices (sexual harrassment of men anyone?) eventually letting it slip that he just couldn't put up with Jennie, the girl in question.
It must just have been easier to accept her physical wobbling.

On the other hand...Sophie, Sophie, Sophie. She owned that catwalk and damn did she look incredible!

Monday, July 14, 2008

Britblog Roundup #178

The Britblog Roundup #178 by Jackart at A Very British Dude is up, containing this post from yours truly. Thanks Jack!

Great Care?

As far as I can make out the main arguments the medical bloggers have against this site (and others like it which have been around far longer) can be summarised as follows;

That it is shabby and unpleasant
That the families of recently deceased doctors might be distressed by their reviews,and that they may be posthumous.
That it is not a reliable or valid way of assessing doctors.


Having spent some time thinking about the issue I keep returning to the same conclusion. Whilst I'm not necessarily in favour of such sites, and nor do I for one moment believe the rubbish spouted about doctors in the media, I just can't see why being publicly reviewed is such a heinous crime . Dr Crippen initially cites an example of a woman negatively reviewing her mother's consultant and later that of a Dr Julie Webster by a patient Dr Crippen describes as wanting to be treated by
a 'homeopathist, or some such wibble merchant'

However, upon reading the relevant reviews, the criticism made of Dr Webster is actually that she can be very abrupt and that they got the feeling she could not be bothered. The final comment is that she had very limited views on 'alternative' types of care etc
As there is no definition of what 'alternative' means in this particular circumstance it seems a bit of a leap to insist it is wibble. It seems more like a reasonable criticism by a patient of a doctor, especially in light of the actual ratings given, 70% for trust, and 55% for listening. Another patient has provided a glowing review of Dr Webster, leaving the overall picture for a potential patient that this is a pretty decent family doctor who perhaps can comes across as not having quite enough patience on occasion.

Although I have just posted multiple experiences of poor treatment by doctors I can cite as many examples of wonderful treatment. I don't have enough good things to say about my current GP, but I know plenty of people who couldn't say enough bad.

I'm not sure that there are good or bad doctors as such, rather I believe there are doctors, any of whom can be good or bad depending on the circumstances. Ultimately the real issue here is one of the best possible care for all patients in all possible situations and how to achieve that.

Perhaps I would find it easier to understand the upset of the medical blogosphere if they separated the issues surrounding the idea of patients being able to publicly review doctors from those concerning the owner of the site? Oh, and whilst we're at it, perhaps it is time to move from this constant criticism and constructively debate what needs to be done to reform our health service and how all of us might best effect those changes.





I want great care!

As the issue of I want great care heats up the various medical bloggers I thought it time to relate some of my experiences of 'great care'

Including but not limited to;

'Oh shit'

Being screamed at by a surgeon in front of a ward full of people that I did not and had never had anything wrong with me and should never have been 'given' any surgery (I suppose I can give him credit for that part even if he was somewhat mistaken about the nothing wrong part) It was followed up with his promise to make sure no other doctor in the hospital treated me and assurances he would be urgently referring me to 'the psychologists'. I know the NHS can be a bit slow on occasion, but I feel it's safe to say 5+ years on that referral was never made. PAL's advice? Well, you see that's how men speak to women in his (European) country of origin and so you'll just have to put up with it.

The GP who, after telling me I was somatising changed his opinion to tell me I just made it all up because I liked the attention. Contrary to seemingly popular medical opinion the two are not the same. Despite claiming he would be happy to be proven wrong, his response to my initial diagnosis of EDS by an internationally respected professor of rheumatology was 'we'll see about that'. Well, I suppose it is difficult when you've told the patient they definitely, do not, under any circumstances have that condition or any other related one as they have nothing wrong with them.

The paediatrician who, when I was 14 deemed it appropriate to suggest that I should lose weight if I wanted to appear taller. I've never weighed more than 50kg.

The GP who after I was diagnosed (at the age of 28 and severely disabled) commented that they 'were not surprised, and didn't I always say you had some sort of congenital laxity issue', following it up with 'so, is it better to be physically ill than mad then?'

Then there was the paediatrician who laughed in my face and told me not to be so ridiculous when I asked if I could have Ehlers Danlos Syndrome. Oh the irony.

The consultant who insisted I must never get pregnant because there was such a high probability I would die. Horribly. Good job I checked and pushed for clarity on that one as it turned out his claim to know all about EDS via the sister of someone way back at medical school (oh, you know her too?) turned out to be knowing so much he didn't know there were different types. Or that the vascular type of EDS is the only type limiting life. Or in fact the only type to potentially cause the kind of complications he vociferously insisted I would experience during pregnancy. Sterilisation anyone?
His listening skills were tip top too. I said surgery wasn't an option...so he booked me in anyway...and took the time to write explaining it wasn't surgery, it was just a procedure. Funnily enough I wasn't fooled. (the surgery/procedure was non essential and the reason I'd refused was because people with EDS tend to have such disappointing surgical outcomes)

The A&E doctor who suggested I should sit on the sofa surrounded by bubble wrap, watch tv and never move so as not to be injured. They weren't being sarcastic either. Or witty.

Oh, and my personal favourite. The doctor, who upon hearing my boyfriend was a new house officer suggested 'he come down this end to get a proper look' y'know, as he wouldn't have had the chance to 'see one of these' yet. Trust me on this, they are not words any woman wants to hear when her legs are in stirrups. I really should've thrown the doctor out of the room at that point and not my boyfriend, after all, he was only following the advice of a senior colleague.

My conclusion? Communication skills, or more importantly the lack of are the most significant factor causing upset between patients and doctors. It shouldn't take a website to improve the situation, but, given the current lack of appropriate ways to resolve disputes perhaps it is actually a step in the right direction?



Thursday, July 10, 2008

The price of beauty

I keep hoping that this isn't true, after all it is a certain paper. Tragically I know it is not just that its true, it is that its far from unique.

via NHS Exposed

Britain's Missing Top Model-Episode 2

aired on Tuesday, and after watching it for a second time my overwhelming feeling remains confusion. No-one seems to be quite sure whether this is a competition to find a model who happens to be disabled, or a disabled woman who could potentially be a model.

This episode showed an increasing distinction between visible and invisible disability, with Sophie in particular having strong feelings that the girls with invisible disabilities being pointless in the context of the competition. To me that showed a lack of understanding of the nature of disability as a whole more than anything else.

The episode focused on lingerie modelling in which all the girls looked great. Lillie was told if she wanted to be a lingerie model she would need to tone up, which was a fair and reasonable comment particularly as it was emphasised they did not mean she needed to lose weight. Unfortunately that was how the comment was taken and did not go down well with her, and she was still angry about it when she was evicted.

The other girl who did not get through was Debbie. I was a little confused about her inclusion as it is supposed to be Britain's Missing Top Model, not Missing Top Model and Debbie is Dutch. One girl who did get through was Jennie, the American girl who, despite any issues with her personality is certainly stunning model material, unlike all of the girls. Being particularly brutal there were a few girls who would not stand a chance in other modelling competitions, and although I may be wrong about this I feel the girl who wins should have the looks to win any modelling competition, not be included because they happen to have a disability.

All in all though, the show is a great watch, and I'm looking forward to next week!



Tuesday, July 08, 2008

Bog Off! Exhibit 2

At first glance this seemed a better disabled loo than many.

It was clean, the door locked, and er, did I mention it was clean?


There was of course no mirror in sight, after all, disabled people couldn't possibly want to look at themselves now could they?

The real problem was a bit more fundamental than that though-size matters!

My wheelchair (pictured) is child sized and fortunately I am able to get out and move around independantly. Fortunate as the space allocated was not big enough for a full sized wheelchair to fit where it would need to for someone to transfer and heaven help anyone needing assistance or an area for adult changes.

Hello my name is Bendy and I am an idiot

Today I received confirmation of something I have long suspected. I am an idiot. I realise this is not news to the rest of the world, but somehow, every time, it manages to surprise me.

The confirmation? My camera which I have deemed broken since last year, taken away to be fixed by surrogate dad. Not broken at all, just in need of batteries. Batteries the right way round that is.


PS. Yes, I do know there is a handy little pictoral guide in most battery containers. What can I say? It's why I'm an idiot.

PPS. It's all in the title. The original non corrected one.

Thursday, July 03, 2008

Poison Plants, Infectious Insects and Troublesome Teens

After a week of 'aquatic school' we emerged, some more scathed than others, as fully qualified open water lifeguards and level 1 instructors in canoeing or sailing. A few more days were spent learning how to collect, prepare and chop wood and such delights as the one match fire-an amazing feeling the first time you achieve it! We prepared the camp for the children's arrival, including putting all the tents up and clearing out under the platforms they sat on where all sorts of nasties liked to lurk.

Although none of us knew each other before we'd arrived at camp I ended up sharing a tent with a girl who'd been in my brother's class at high school, it really is a small world! In that first week or so we had to purchase all sorts of things we needed to get through the summer and would not have been practical to bring from the UK even if we had known about them. It was so humid in the woods that it was essential to buy sealed plastic boxes to store our clothes, and despite being warned it would happen, more than one person ignored or forgot the warnings about keeping food in tents and was visited by hungry raccoons!

Eventually, after what seemed like an age the campers arrived. The camp catered for children from 5 to 16, although the part I worked on was specifically for 14 to 16 year olds. The idea of sending your children away for a whole summer, especially at 5 or 6 was alien to those of us from outside the UK and took some getting used to. Fortunately though, as we were working with teenagers we did not have to share tents with them and had our own to escape to.

Many of the campers had been spending their summer's together for the best part of 10 years and so knew each other well. Generally speaking the children were from wealthy families although some benefited from scholarships. The ethos of the camp was to encourage team work, personal responsibility and leadership so right from the first day the campers were expected to be up at 7am and out collecting the wood they needed to cook their breakfasts. Lunch was the only meal the whole camp shared unlike breakfast and dinner where full meals were cooked over the fires in small cooksites.

Setting up the camp had been an interesting experience, particularly for us Brits unfamiliar with the kind of wildlife we encountered. By the time the campers arrived half a dozen of us had ended back at the pediatrician's confused by the new ailments afflicting us, poison ivy was all over the place, and despite warnings many of us had not recognised it, and it took the itchy blisters for me to realise the undergrowth I'd fallen in was a good example of poison ivy, ugh! Still, I was luckier than one girl who was bitten by a deer tick the first day she arrived and diagnosed with Lyme's disease a few weeks later. It transpired that so many of us had appeared in such poor condition that the doctor we saw telephoned the camp director to complain and insist they take better care of their staff.

Camp very quickly settled into a routine of wood collecting and fire burning. As counselor's we were entitled to 1 full day off work a week (although in practice this didn't always happen) and we were expected to 'teach' lessons of approximately an hour long throughout the day. It very quickly became almost impossible to put on as many different activities as needed each day, so before long things like water polo or walking sat alongside such delights as cloud watching and my personal favourite, fish feeding.

To put on any water based activities we needed lifeguards as well as counselor's organising the activity. The fact that only a small proportion of us were trained made things more tricky. The camp was based around a managed lake of about 3 miles in diameter with beaches at different points to access. The lake was fully stocked and so it wasn't unusual to find yourself being nibbled by a fish, especially during late night skinny dips, damn those things could give a good nip!

Whilst standing with a group of campers by the lake, as usual there was some mucking about going on, what seemed like good natured jostling and giggling in abundant supply. I was waiting for my lifeguarding session to start when one of the boys took things a bit too far. A heavily muscled 15 year old on his school wrestling team grabbed my wrist, pushing it up my back to my shoulder before flipping me around and lifting me off the floor by my wrist. I didn't know it at the time, but apparently it was the noise of popping and snapping joints which alerted the nearby group of adults. My scream came later.

By the time the others had sprinted over I was on the floor where I'd been dropped feeling pretty dazed and confused. Despite my spine having been affected I was helped to my feet whereupon it was immediately obvious that my shoulder was dislocated-it was hanging several inches lower on that side than the other! After a bit of fussing, including phone calls to notify camp directors I was eventually taken to the doctors. The pediatrician, again. Jolting along the way over rough tracks in a van.

The doctor was, unsurprisingly not impressed and after examining me insisted I be taken immediately to the ER. Having no idea I had EDS(Ehlers Danlos Syndrome), this was to be my first major recognised dislocation. Eventually, much later that evening I was seen by a very sweet doctor in the ER who was very excited to quiz me about whether, being from the UK I had chilblains. I was able to make him very happy with my colour changing feet! Being particularly concerned about my body weight the doctor gave me half a percocet, a sling and instructions that I needed to rest and follow up the next day.

I didn't sleep much that night between the weird sensations caused by the dislocations and the lack of pain relief. I was woken the following day by my very sweet campers who'd brought me breakfast-fruit they'd already peeled and cut up. It was a special day, and the reason I've never forgotten the date of this event. Rather than enjoying the fireworks and celebrations with every one else, I spent the 4th of July going back to the doctors!

Update: Happy Independence day to all my American Readers!

Wednesday, July 02, 2008

The Jobbing Doctor and The All Work Test

An interesting and moving post from the Jobbing Doctor about the 'all work test' seen from a GP's perspective. Well worth a read as it is more evidence of how the system treats the truly vulnerable.

Tuesday, July 01, 2008

Britain's Missing Top Model-First Impressions

are mixed. As regular readers of this blog may know I have a bit of a bee in my bonnet about disability and attractiveness. For this reason I was delighted to hear about this show, and the desire to show that disability is no bar to beauty was clearly a motivating factor for many of the girls. I felt some sort of profound and inexplicable connection to a community I feel part of yet never have the chance to see.

Having said that, I found that the range of disabilities was disappointing, girls lacking a limb being
rather over represented. The feeling that there was no point in having a girl who's disability was not visible to me highlighted the lack of understanding on the part of the judges that the vast majority of disabilities are invisible with all sorts of problems inherent to that. With that in mind I have decided to include an old shot from my (very much younger, brief and limited) modelling days.

The attitude of the majority of the girls will hopefully go a long way to showing that disabled people are not the whining scroungers politicians and popular press so delight in portraying, but are in fact motivated, determined and hard working individuals.

The way so much focus was given to Jessica's upset over her condition was also deeply disappointing playing as it did to the mawkish image of disability as tragedy. All in all though it looks set to be a great series.

Britain's Missing Top Model

Tonight at 9pm on BBC3, and about time too!