Tuesday, May 26, 2009

And the sign said....

Indonesia seems to have been taking lessons in how to treat disabled people from the very hypocritical James Purnell. Their suggestion is that disabled people will have to wear some sort of visible sign to identify their disability to road users.

Haven't we seen this kind of rule forcing people to wear signs to identify themselves somewhere before? Oh yes, I remember now, wasn't it that Hitler chap?!


H/T Incurable Hippie

Wednesday, May 20, 2009

Dental Hospitals

Following on from the comments on Delightful Dentistry I thought a few words about dental hospitals might be a good idea.

I was being seen by an NHS dentist (and very fortunate to be able to find one!) in a standard dental practice. I was referred to the dental hospital because of the complications of EDS. However, anyone can attend a dental hospital and receive emergency treatment free of charge. As I understand the situation some dental hospitals run standard dental service clinics, particularly for children, but they are probably tricky to find.

To be referred to a dental hospital if you have special needs is straightforward. The nearest dental hospital will be based at the nearest large university which has a medical and dental school attached to it. A GP can refer you, or your consultant. I suspect for those who need to see a specialist dentist for medical needs that a phone call to the dental hospital will give you the information you'd need about which particular specialist to see and how to be referred to them.

The treatment at a dental hospital is provided free at point of delivery by the NHS just like any other hospital service. It's worth traveling for, even if you have to travel a fair distance as they have the facilities to tailor the care to individual needs.

Google list of dental hospitals (there are probably more if you put in tailored search terms)

Tuesday, May 19, 2009

Delightful Dentistry!

Last week after no little stress about parking I went to the Dental Hospital in Liverpool for my appointment with the specialist. I was shattered and lacking spoons having been at Futuresonic the previous day so I wasn't thrilled to have to haul myself out of bed at some ungodly hour. Probably about 8am!

After all that fuss about parking it turns out there is a shuttle service from the hospital's multi storey carpark across to the Dental Hospital. Having previously experienced such services which finish before the outpatient's clinics do thus abandoning one miles from the car I'm wary of them. Fortunately it is possible to use a bluebadge to park on the road outside the hospital but not before 10am.

From start to finish I was incredibly impressed with the staff at the Dental Hospital. Once I'd arrived and registered I was helped through to where the clinic was and before long was taken through to see the specialist in restorative dentistry.

I nearly fell off my feet when the dentist and her lovely dental nurse informed me they knew lots about Ehlers Danlos Syndrome because they were already treating three other people with EDS. Whilst I've occasionally seen doctors who've known a little bit about EDS, outside of the bendy people specialists I've never been in a situation where medical professionals are well versed in the ins and outs of EDS. It was really quite bizarre, but in a good way, especially once I realised they actually did know a great deal about EDS rather than just insisting they did so!

The dentist asked me the usual questions dentists ask but also lots about EDS and how it affects me. They were quite anxious about the idea of me dislocating whilst in the dentist's chair, but I think(hope!) they became less so as I explained I relocate my own joints. As I was sitting in the chair I had to relocate my thumb which made such a noise the dental nurse went green, although not as much as the dentist did when I mentioned dislocating my larynx! We had a discussion about how they would manage should I need a general anaesthetic, it seems the level of knowlege at Liverpool's Dental Hospital is so good they even have a particular anaesthatist they use who treats all the EDS patients. The conclusion was that should I be anaesthatised they would want to put me on some sort of spinal board to stop me flopping about too much and to manage my airway more intensively.

LC referred me to the dental hospital after my regular dentist had told me I needed a filling, because people with EDS often have problems with local anaesthetics, particularly lignocaine. The problems vary, for some it can take a long time for the area to become numb, in others the anaesthetic seems to travel and they become numb, just not where the anaesthetic was placed. In my case I was shocked to discover local anaesthetics were supposed to make you numb as I'd always believed them to be a particularly poor form of painkiller. I've also had problems with scalene blocks not numbing me properly.

I needed to have some x-rays done so the lovely dental nurse helped me to the radiology department. She was apologising that I'd have to wait until the reports were ready to bring back to clinic so I thought I was in for a long wait. It was maybe 10 minutes or so before I was taken through to be x-rayed. The department's most senior radiographer explained to me that as soon as she'd seen EDS on the form she'd decided to x-ray me herself as it wasn't appropriate for a student to do alone. The biggest problem I had was standing up for the length of time it took for the x-ray machine to take the image, even holding on to the handrails I was still a bit wobbly. Should it be necessary to have more x-rays I'll be sitting down next time! I've also still got a paper type cut in my mouth from the sharp sided x-ray plates.

After only a few minutes the radiographer gave me the reports and I headed back to clinic. My teeth are actually in excellent condition, and as I'd part suspected I don't need any fillings. I occasionally refer to my mother as 'the sugar nazi' and I have her to thank for the good condition my teeth are in. To say she was fanatical about not allowing us sugar as children is understating the case, but as I've reached 33 without needing a single filling I'm grateful.

The main problem I'm having is some erosion. As I don't eat an overly acidic diet the source of acid is probably stomach acid coming into the mouth via reflux. The long periods I've had in the past when I've been so lax I've been unable to stop vomiting have also contributed. The dentist prescribed me some sort of special toothpaste which being scatty as I am I forgot to pick up before I left, and arranged for me to see the specialist dental hygienist as my teeth need far more frequent cleaning than is normal.

Whilst we were talking the dentist asked me if I would go and give a talk to their 4th year dental students in September to educate them about both EDS and the additional needs people with disabilities or chronic health conditions have regarding dental treatment. Any advice readers can give I'd love to hear, from those with additional needs or from those who are students/medical professionals about the kind of things you would want to find out about?


Monday, May 18, 2009

Bog Off! Exhibit 12 Getting it right!



Last week I went to Manchester to meet Louise Bolotin and Mario of Someone Once Told Me at Futuresonic festival.

Quite what the other festival go-ers made of our unhealthy interest in the disabled toilets I'm not sure, certainly the poor man who I insisted had to wait whilst I finished photographing an empty loo looked at me as though I was a tad nutty.

Ok, so there are some issues, such as the pull cord being wrapped around the hand bars, or tied up out of the reach of someone on the floor, but these disabled loo's are about the best I've ever seen!




Wednesday, May 13, 2009

Bog Off! Exhibit 11 Missing the point!


Sent in by BSS reader Louise, this is the disabled toilet at The Crown in Digbeth, Birmingham. Apparently it was clean which is a bonus considering the state of most disabled loo's, but looks like someone somewhere has seriously misunderstood what a disabled toilet is for.....

...And no, it's not for shagging, snorting or storing. Just in case anyone wondered!





While I'm at it, if anyone has sent me photos of disabled toilets and I've not published them so far, that is because I'm ridiculously scatty and have inevitably lost them. Sorry! All contributions welcomed and I promise to try not to lose them.

Tuesday, May 12, 2009

Resolution

Last New Year's Eve I made two resolutions.

The first was to sell a piece of writing.

Today I've achieved that resolution, my article has been published here, on the BBC's disability website Ouch.

You'll have to wait until I achieve the second for me to admit what it is!

For anyone visiting this site for the first time as a result of the Ouch article, Hello! These are the posts I'd recommend you read:

A Question of Chance


Never Neverland

In the eye of the beholder

Hip Popping

Poverty

Dear Samuel

I see your true colours

No special treatment-the practical response


The Job's fair, Part 1, 2 and 3

Page 18, Other Information

Chocolate

Phone a Friend

The great toy review

Mac An Cheez Plz


Bog Off

Some posts contain NSFW material, particularly Phone a Friend and The Great Toy Review



























Monday, May 11, 2009

Thursday, May 07, 2009

The principle of the workhouse

"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 unlovely' James Purnell is too busy claiming for his weekly grocery bill , rent and cleaners to deal with the state he left his flat in, let alone comment about his hypocrisy, I'm directing you to this post by Brainblogger which is a poignant insight into the impact of such reforms upon the lives of disabled claimants.

Income Support rate for single adult over 25: £64.30 per week.
Carer's Allowance : £53.10 per week

Courier firm swindle NHS

Instead of a nail, this lot wanted the whole damn shoe! The courier firm conned the NHS out of
£250,000.

Wednesday, May 06, 2009

Things that go bump....in the grass!

The weather was nice on Sunday so Conventgirl and I went out for the day, and what a day it was! We started by going for lunch in a local pub. It was packed out as it was showing the football live, neither of us knew there was a match on, but as one of our aims for the day was to enjoy watching menthe view we weren't too bothered. We managed to find a table and because my food choice was typically awkward I went to the bar to order. The queue was lengthy and there was no way I was going to be able to stand and wait. I asked the very pleasant lady stood behind me if she'd mind my sitting at their adjacent table whilst we queued which she was quite happy to agree too. Eventually the order was placed and I returned to Conventgirl and our table.

It was moments before I was approached by an older lady who'd been further back in the queue. Tentatively at first she asked me if I was disabled, and when I confirmed that she started to tell me that my 'scooter' was blocking an entrance. Now, I was a little confused as I don't have a scooter and assumed she must've muddled it up with the car which we'd parked in an adjoining road, but no, she meant a scooter. Someone had parked one poorly, blocking people's access. For some reason she made the connection between me being disabled and it being my scooter. I can sort of see the link, but as there were at least half a dozen people in the pub I'd spotted with wheelchairs or walking aids I'm not sure why she assumed it was mine, perhaps because I didn't have any of those aids with me.

The confusion was cleared up in time for our lunch to arrive, although I don't think the lady found the owner of the scooter. Conventgirl and I tucked into our food and talked about menswine flu. Conventgirl has had a cold all week, and she did go on a plane so of course it must be swine flu, even if it was me coughing all over the place and not her!

After lunch we decided to go for a drive and have coffee somewhere. Eventually we drove past our holy grail, a rugby tournament. Well, that was us set for the afternoon! Or so we thought

Pulling up at the entrance I asked the marshals where the disabled parking was. Blank look. Eventually one of them asked if I had a blue badge, and when I showed it to him handed over two wristbands and waved his arm vaguely in the direction of 'over there'. Fair enough we thought and went over there.

We managed to park, get the wheelchair out and head off. Slowly mind as pushing a standard wheelchair over rough grassland isn't exactly easy. Our second disappointment was the lack of beer tent, not that I really drink but CG does. Apparently the club had decided to ban alcohol from the main ground after a mass fight a few years ago, the only place alcohol could be bought and consumed was by the clubhouse which seemed fair enough. Only club members allowed up there though. Again, fair enough, it's their club. Although neither CG or I are strangers to the place as both my younger brothers played there for years and CG's nephews were playing in the tournament itself.

Before long CG and I were approached by a couple of club members there to supervise their teenage sons. They wanted to make sure we were ok. Nothing to do with us being the only single women over 15 in sight of course! They were very nice gentlemen though, and one was on the committee of the rugby club. He volunteered himself as chief wheelchair pusher and as is typical for the area I live in, within a few moments we'd established we knew each other from one of my previous places of employment. I didn't need a wheelchair in those days so of course he wanted to know what had changed and in the course of the conversation he realised that the club didn't have any facilities for disabled people and became very embarrassed about that.

Now, generally speaking I wouldn't particularly expect a small town rugby club to be top of the list of accessible venues, but on the weekend of a popular tournament I did think they'd at least have provided an area of disabled parking and an accessible loo. It turned out the wrist bands we'd been given for free to gain entry should have cost us £7 each...which is probably why we weren't charged, the marshalls assumed we'd be leaving immediately as there was nowhere to park or pee. The pub we'd been in for lunch had had a high number of people with all varieties of mobility problems because, although far from perfect they have ensured level access and accessible toilets. Many of those people had gone there specifically to watch the football, and I expect many would have liked to enjoy the live rugby too (even if perhaps not for the same reasons as CG and I did!)

Nice gentleman went off and bought CG and I some tea, and we carried on chatting as he pushed me from pitch to pitch. NG knowing full well what the appeal to CG and I was! As we talked I mentioned the murderball documentary. Nice gentleman had been mentioning his fears about his son being injured playing rugby and during the conversation I said that I thought it was very strange for a sport with potential to cause spinal cord injuries not to be considering the needs of it's injured players. Some clubs are excellent at doing so, but certainly in my area it doesn't seem to have occurred to anyone. I mentioned Daniel James's tragic death and that, although I have no knowledge of how supportive or not his rugby club were, it seemed as though such players need all the support they can get from their former clubs and sport in general.

Nice gentleman became increasingly embarrassed that as a club and committee they had not even thought to provide any disabled facilities. This was highlighted when I needed the loo. There are toilets in the clubhouse, which although not designed to be accessible would have been suitable for someone with my level of mobility, and said he was more than happy to push me up the steep slope to access the clubhouse. He left us to go and ensure that was ok, but returned shortly afterwards to explain he was sorry and ashamed to say that those in charge of the club had refused to allow me access to the clubhouse to use the toilet.

There were some portaloo's on the grounds so instead Nicegentleman and Conventgirl pushed me over to them and helped me up the very steep steps. Inside the toilets were flooded with water and dangerous for anyone, let alone someone not too steady on their feet. Nicegentleman waited outside to assist me back down the steps. He was clearly mortified about the situation and said he would be raising it formally with the club, and that he hoped I would make a formal complaint to them. I'm very reluctant to do so as this is such a small community, and both I and my family are known well to several of the club's committee members and certainly many members of the rugby club itself. It shouldn't matter, but it does.

Conventgirl and I certainly attracted alot of attention from the rubgy players, although for all the wrong reasons. Many were staring openly at the wheelchair, but more so when I decided to just get out and walk. People literally reeled back in shock when they saw that. One player in particular (and very nice looking he was too!) just kept staring at me. I laughed at him, so he laughed back, but continued to keep on staring and laughing long after I'd got back in the wheelchair to stuff myself with icecream. He clearly wanted to ask some questions but was too embarrassed to do so. All the adults were shown up by a group of fairly young teenage boys who initially stood infront of me in my wheelchair blocking the view of the pitch, but quickly realised, apologised and moved over.

Eventually we decided there were only so many gorgeous muscular thighs we could perve atto call it a day and headed back to the car, Conventgirl pushing. At which point we hit a pothole. Hard! I dislocated my hip and fell forwards out of the wheelchair* There was a reason I had such a lecture from the wheelchair centre about remembering to put my seatbelt on, and this was probably it**. After a moment or so it became very obvious my hip was fully dislocated and the only way I could relocate it would be lying flat on my back. Conventgirl went and got a couple of the RedCross volunteers waiting nearby (who looked like I'd made their day!) to come and assist.

The RedCross people lifted me up so that they could lower me down on to the blanket CG had fetched from my car. Although they were very kind, one of them had a deathgrip hold of my arm which is still painful now! Once I was lying down I could mobilise my hip but it was a struggle to get it back into it's socket, it just wouldn't settle and kept flicking out. For a horrible moment I was having visions of being forced into A&E on a bank holiday sunday evening, which is quite the punishment for anyone. My hip was dislocating posteriorly which is much more difficult to relocate than an anterior dislocation, especially as I usually find if it's dislocated that way it gets stuck on what I assume must be the rim of the pelvic bone. I suspect this time I've put a tear in the labrum, which is something I've done on many occasions in my shoulders. If that's the case it'll heal on it's own eventually and going by previous shoulder surgeries will heal better if left to it's own devices.

It took a good five minutes for me to get the hip back into a reasonable position but it was having none of it and I couldn't weight bear at all. We decided CG should drive my car home and after some paracetamol provided by the RedCross off we went. After all, the drugs in my flat are far, far better than paracetamol! I must remember to go and get some more Oramorph from my GP, it's expiry date was 2007. Seemed to do the trick though!






*As far as I'm concerned the liability for this rest squarely upon my shoulders. I knew shortly after arriving that there were no facilities (although not about the lack of loo) and made the decision to use a wheelchair on rough ground knowing I was at risk of being catapulted out.

**Actually if I'd had my seatbelt on it would probably have been worse because I would've ended up with multiple spinal dislocations from being held in place

Tuesday, May 05, 2009

You couldn't make it up!

Msn Chat with anonymous dating site blokey earlier today

Anonblokey: Forgive my retarded typing

BendyGirl:I'll forgive the typing, but not so sure about the word 'retarded'

Anonblokey:so what do you write about then?

BendyGirl: Disability issues mainly.

Anonblokey: Haha

BendyGirl: No, really

Anonblokey: I'll get my coat.


Friday, May 01, 2009

Words Hurt - Blogging Against Disablism Day 2009

Today is Blogging Against Disablism Day 2009. I was unsure what my contribution should be and had been considering a blog about what phrases like 'managing' or 'coping' really entail in relation to living with a disability. However, after events of this week a subject presented itself.

On Wednesday I wrote a blog about disablist language. I misread a phrase in a blog on Liberal Conspiracy and wrote my own blog to say I found the language offensive and disappointing, especially on a site supposed to promote liberal values. I did misread the phrase, we all make mistakes and misinterpret things, particularly with the written word. As it lacks the inflections and nuances of spoken words, the background which gives them meaning is more difficult to discern on a page. The phrase had been written as 'brain drain mongers' and instead of the intended meaning of monger as in fishmonger or warmonger I misread the phrase to read 'braindrain mongers'-as in only someone as stupid as a 'monger'* would think that. Like I say, I misread it. Easy done, I offered my apologies to the author of the post, but he was neither offended or upset, why should he be?

He was in the minority though as lots of people were very upset. With me. For having the temerity to suggest that language has the power to hurt. The furious comments under the original blog were deeply depressing as although I'd made a mistake when I misread the phrase, the commenters proved the point I was trying to make. That generally people simply do not consider language which is offensive or derogatory to disabled people in the same way they recognise the power of offensive or derogatory language when it comes to race, gender, religion or sexuality.

I was lambasted for making such a 'retarded' comment, held up as an example of everything wrong with political correctness, mocked for my evidently New Labour sink comprehensive education** and various other comments in that vein. I was particularly bemused by the comments relating to making such language illegal or banning words. Some of the commenters headed over to this blog to make sure I knew exactly how stupid I was, and that I had wilfully and deliberately misinterpreted the words.

One commenter made the point that all I had done was to express my disappointment with words which one human being had used which had been hurtful towards another. No more, no less. I didn't call for anything to be banned, legislated or made illegal. I didn't mention political correctness or suggest any form of legal resolution to such issues. I simply stated my disappointment. I'd like to thank the author of that comment as (s)he just got it. They got the point that language can hurt, can be oppressive or derogatory and that it is important to choose our words carefully. They saw that it's important not because of rules or regulations but because it's simply one human being saying to another 'your words hurt and harm me'.




*When I was growing up 'monger' was a commonly used derogatory expression for someone with Down's Syndrome. It's still a word frequently used in the area I live to describe something or someone as particularly stupid.
**Amusingly as my entire education was
at a grammar school during the previous Tory govt