Showing posts with label wheelchair. Show all posts

When drinking wine at sunset in a 'no alcohol zone' its important to remember...Wear pyjamas for that true 'Little Britain' effect...


Photo shows BendyGirl sat in an attendant wheelchair holding a glass of wine with a pink, purple and blue sunset in the background



Photo shows BendyGirl sat in a wheelchair holding a glass of wine, dressed in pyjamas

2 wheelie women, 1 wheelie space #nogobritain

It used to be so easy writing a blog about living with disability - people do funny or silly stuff, write it up, other people read it and laugh or gasp at said silly stuff, job done. I was always careful, just in case someone recognised themselves in the pieces I wrote, and when I lost my anonymity I removed lots of old posts as it wasn't fair to have written about people who had no right of reply. So that's why, since the blog-worthy incident on Saturday I've been wondering how I can write it up honestly when some of that honesty is about people who may read this having behaved badly? It seems the only way is to be considerate but speak the truth.

It all went really smoothly initially - I know the Lime Street assistance staff and they know me, ensuring I'm on the train with no problems - just like any other journey to London. I'd booked my tickets early, reserved the wheelchair space and the seat opposite so I can transfer out of my uncomfortable scooter. I'd even, unusually for Virgin Journey Care received an email confirming that I'd booked that particular wheelchair space and seat. So, when a lady of about my age arrived on the train just moments before departure it was obvious something had gone wrong.

And it had, we'd both booked the same seats. Instead of informing the lady that the seats were already booked when she rang journey care someone simply left my reservation on the wheelchair space and added her PA's to the additional seats. That meant I was booked in, the PA's (her husband and an employed PA) were booked in but the lady using the powerchair was not.

The whole carriage was busy and two women using mobility equipment plus one set of rather pissed off carers meant we were attracting alot of attention. It was immediately obvious that the other lady had to have the wheelchair space - she was a powerchair user who couldn't transfer into another seat whereas I can. It was also obvious that if we didn't figure out a solution quickly between us all that the train would need to leave and we'd be put off the train. The train staff did their best to sort it out, as did I and the other wheelie using lady but the attitude of the people with her, whilst totally understandable was unacceptable and left me feeling really vulnerable and threatened. Had GG who usually puts me on the train been there, there would have been a full on fist fight given the attitude of the other carer's - neither GG nor the other lady's husband were the type of men to back down and neither of us would have managed to control protection fuelled testosterone fury. So, intimidating and upsetting though it was to be on my own, it was probably better that way.

The most infuriating part of the whole situation was that the other lady and I had immediately started to work out between us how we could share the available space - she had to have the wheelie space, there was no question, but fortunately as we were both very petite we could just about manage to re-arrange so that she had room to turn round, and we could squeeze in my scooter so that people could pass. The only reason we were able to do this was because it was a weekend and there were no catering trollies needing to get through - people could pass but on a weekday one of us would have been put off the train.

However, the lady's companions were having none of this 'we'll share' plan which the other lady seemed as ok with as I was. The people in the seats immediately behind offered to move, but the PA's were still cross and wanted to insist I was in their seats and had to move. The other lady had already seen the confirmation email I showed her and knew it was a genuine mistake but the other's acted like I was just one of those people who sit in a wheelchair space and refuse to move.

Things culminated when the PA said to me "I'm not being funny, but you can walk a bit and xxxx can't walk at all, so you have to move" Having exchanged horrified glances with the other wheelchair user I managed to calmly but firmly reply that I was on my own with no support and couldn't move further from the toilet, whilst they were two people to support the other wheelchair user and that it was not a competition as to who was more disabled, but that there was no reason the two of us couldn't share the wheelchair table and the PA's sit immediately behind us. I'd checked with the other lady that she did not have to have her PA's immediately next to her and she was quite happy to share the table with me with her PA's immediately behind me in her line of sight.

The train moved off and that settled things - she got the space, we got my scooter moved and for the rest of the journey she and I had a really nice chat while her companions continued to glower. It was stressful, upsetting and degrading for us both, but additionally for me, enormously intimidating. I understand the attitude of her companions, I've seen a similar attitude occasionally amongst some of my friends when access has failed and the general public are being deliberately unhelpful, but this was slightly different - I was a disabled woman on my own and of all people I sort of expect other disabled people and their staff to understand. The other disabled lady and I understood each other perfectly, but for some reason her companions thought it was acceptable to be aggressive and intimidating not just to a woman alone, but another disabled person.

Given the potential for the other people involved to read this blog post I can't take the easy route, call them wankers and be dismissive of their viewpoints. So, instead I'll just say to all PA's, carer's, family or friends of disabled people - please bear in mind the affect of your actions on other disabled people, not just the one you are with. We all understand the frustration, we all live with it, so that means that of all people we should treat each other with that compassion and understanding, not go off like a bottle of pop at the first hint of a problem!

Building Better Access - 007 Style

All too often getting anywhere is such a struggle for disabled people that the effort can feel too much and so we stop bothering. So, when you come across good access it can be extremely exciting (and yes, I do need to get out more!)

I was back in London this week for the Brandon Trust 100 Voices on Transport event at the House of Commons, hosted by MP Charlotte Leslie and attended by the Mayor of Bristol, Peers, a DWP Minister and representatives from transport companies. It was an exciting day for us all, but my favourite part was seeing people with learning disabilities supported by Brandon Trust giving eloquent, powerful, first person testimonies to politicians on their experiences of travel. All in all it was a successful event and happily I didn't spill tea or have to take my knickers off and we'll simply gloss over the glass of water I may have poured on myself.

Because travel is so difficult and exhausting I'd arrived in London the night before the event, so had time to meet the fabulous Fiona Laird for lunch. Fiona had organised where we went for lunch and said she got so fed up with places saying that either they didn't have access or that they did but it involved going into a different building, around the back etc to get to the venue that when Brasserie One said they had full access it was a simple decision - we were going there.

I'd had the usual experience of a cab company refusing a wheelchair fare, so it was great to travel with a black cab driver who was keen to make sure I knew all about the taxicard scheme and that it was being cut back and altered. When we arrived at Great George St, which is a Grade II listed building we were all a bit confused - there was a double flight of stone steps outside the building, so as is typical we all assumed the access must be around the side. While we were still scratching our heads the doorman sprang into action and started up the access which turned out to be the most incredible retracting accessible stone steps with a wheelchair lift embedded underneath them.




It's fair to say that complete overexcitement about the James Bond of the access world was the dominating theme at the lunch table, but we had a lovely lunch, and there were even scrummy gluten free bread rolls available. The waiting on staff were all fantastic - warm, considerate and funny, and the food as good as they'd promised us. There was also a properly accessible loo (although not a changing places one I'm afraid) which smelled nice and was decorated in the same style as the rest of the building.

Going to Brasserie One for lunch was an amazing treat - it is Westminster prices but not ridiculous for a special occasion or to be able to have the experience of amazing access and service, and there are starter size portions available for those of us with smaller appetites.

Unusually for a 'ladies lunch' we were quite keen to leave, not just because we had to get over to the Commons, but because the excitement of the stone steps was compelling and we wanted to film them for everyone to see. It wasn't until we were outside marvelling at the whole experience that Fiona and Charlie pointed out something really important, and something that disabled people like myself can get so used to not happening that we take it for-granted.

I got to go into a venue through the front entrance, the same entrance as everyone else, just in more style than most visitors. Once I was inside I was able to be independent as the access was so good, and it was really lovely to see the immense pride the staff clearly had in their fantastic access and willingness to use it.

Going through the front entrance, the main entrance of a beautiful old listed building felt like such a privilege, something I can't remember doing since becoming disabled. It made me feel wanted, that I belonged there, that I could, even if only for a lunch, access somewhere on the same terms as everyone else.

Fortunately before I got too carried away with this marvellous new accessible venue, how I might be able to move in there, and what the world might be like if everywhere made such a creative, resourceful, inclusive attempt at access, we were back to the House of Commons and the more typically experienced version of access. There wasn't a ramp to the podium when I went two weeks ago so I'd had to sit on a table to give my speech - but this time there was a special ramped podium being built. Access, but access the more typical way....and as its me, no-one was overly surprised at the dramatic moment the back wheel of my scooter slipped off the podium causing a bit of a heart in mouth moment for us all! 


Accessible Ireland?

Travelling alone can be a daunting prospect, not least to attend a wedding alone.  The original plan had been to go with another neighbour, but she slipped a disc in her back and was unable to fly. Having fully absorbed the message from our esteemed Minister for Disabled People that everywhere is now fully accessible and disabled people don't need any extra money to pay for that perfect access I wasn't put off by such trivial concerns and on thursday I went to Ireland to see my lovely neighbour marry in her home town of Swinford.

Despite Maria's assurances of perfect access it seemed to take me much more time to arrange my travel and be more expensive than for the other guests. Travel Insurance cost double the standard amount, then there was arranging support at each airport before I went, which could only be confirmed on a 10p a minute phone line. The Bride had booked a hotel with access for the reception, in which I had to stay because whilst all the cheaper accomodation 'just over the road' was within comfortable drunken stumbling distance it certainly wasn't within any kind of deathwalking distance. 

Although I'd been most worried about the airport part of the journey and specifically flying with Ryan Air (who have a certain reputation among disabled travellers) that did all go according to plan. I was running late by the needing access clock, which dictates anyone needing help must be there hours before everyone else to hurry up and wait, but Scousers give assistance in a distinct style so when GG explained I wanted to buy a book before I got on the plane the guy shouted across to the two ladies who came to collect me that they had to make sure I had 50 Shades of Grey before I got on the plane.

I knew there were alot of people travelling to the wedding on the same flight...but unfortunately I didn't actually know any of them properly, and couldn't spot any of the people I would've vaguely recognised. But, I did have to give Maria some credit as I got the crip perk on the plane of a row of seats to myself. The flight was of the variety where people sit in stunned silence apart from the odd involuntary scream. The weather was dreadful and Liverpool to Knock is a notorious route for turbulence so it was a white knuckle 40 minutes fighting the need to vomit.

My neighbour had booked an accessible mini bus to take us from the airport to hotel which we eventually managed to find after a somewhat disturbing Mrs Robinson moment. There was a very attractive young man who looked in his early 20's on the flight who was also going to the wedding, who helped with my bag. I began to think it might be great fun until he told me had never flown alone before and his mum hadn't given him any money for the mini bus at which point I felt like a paedophile!

When the mini bus arrived it was accessible in that it did have a ramp and some grab bars. Except the ramp didn't work and it was only accessible if you could get out of your wheelchair and be helped onto the bus. Oh and have a child sized wheelchair that can squeeze into a very small space. I had a moment when I realised the powerchair I've been dreaming of to increase my independence would actually have made me more dependent and left me stranded alone at the airport. But it's ok, that shouldn't be a barrier to spending £6500 on a powerchair, the UK's definitely all accessible and that would never happen. I trust that nice Maria, she looks awful sincere when she says that.

The mini bus journey was similar to the flight...with the added smell of old diesel for ambience. We all sat, in somewhat shell shocked silence, fighting the urge to vomit. Eventually we got to the hotel in Westport and then it got really tricky. But, I was in Ireland...so I offered up my prayers to Maria. I knew she'd fix it.

There were plenty of people attending the wedding booked into the hotel, plenty of whom had said they'd be happy to give me a hand when the bride asked them. And they were...but I couldn't find any of them until late that night, by which time I was feeling horribly vulnerable, scared and upset. The accessible room was way too far from the lift, as they often are in hotels, and the wifi was only in reception. The instructions about putting towels on the floor when I had a shower struck me as slightly odd in a 4* hotel, but I was initially impressed by the newly built wetroom. It had a proper level access shower, adapted loo, sink alarm cord and a shower chair. It was a bit weird that it was directly off a non accessible bathroom, but well, access, hurrah! And then I had a shower....

Despite six towels on the floor when I came out the outer bathroom was completely flooded and the carpet by the bedroom door saturated. Which explained the awful smell in the hotel room, it was damp and mould so pervasive that when I opened my bag on returning home, everything in it stank. It turned out that somehow, the builder had neglected to put any kind of slope into the wetroom floor so that when it was used it was just like pouring a hose onto a normal tiled floor. As both bathrooms flooded beyond the capacity of any towels to deal with it was also really dangerous. But, it was access. I gave my thanks to Maria once more.

I went to bed early knowing it would be a long day, only to wake up at about 3am when the great vomit experiment decided to go international. After a long night during which I was able to ponder the relative different ways medications appear after being thrown back up, including several supposed to stop throwing up medicines I was in a bit of a state. I'd booked room service the night before to avoid the deathwalk up to the reception, ignoring the additional cost because I have such faith in Maria, so I was hoping that I might be able to keep some food down and make it to the wedding. But breakfast never arrived so just after 9am I staggered into reception, grey and shaking and burst into tears at reception. With only one noteable exception all the Irish people I met were incredibly friendly and willing to offer help, and the hotel staff were lovely. After I'd managed to explain I didn't need a doctor, they found me some lemonade, promised to send breakfast down to the room and get the flood cleared up. The lemonade made it to the room but breakfast never did and flood clearance didn't happen until late afternoon.

I didn't make it to the wedding, which was a 45 minute coach journey away. Fortunately I managed to stop throwing up and get some sleep so I did make it to the reception at around 5pm. It was a lovely night, and I even had a bit of a dance....well, the bendy version of dancing which is wiggling about a bit. It's often easier for us to do that than stand or walk. At the end of the night there was even some wheelchair dancing...the instructions for which were a much needed 'hang on tight!'

One of the other girls offered to push me back to my room and we sat outside before heading back. Which is when we met the noteable exception. He looked down at me in my wheelchair and loudly accused me of faking it as I'd been walking earlier. This was met by a kind of stunned, uncomfortable silence as people who didn't really know each other all looked at each other in confusion. Had he really just said that? He had. And chose to follow it up by looking me up and down while explaining he was from Kerry* and therefore rude, then sneering that I would clearly never get laid again. The silence got a bit more stunned and not really knowing what to say to a drunk stranger who looked as happy with his opinions as Toby Young is about wheelchair ramps I smiled, and said everyone had to have a talent...his was clearly offending people.

Irish weddings don't finish until the last person keels over so there was many a sorry looking person waiting for the mini bus back to the airport the next day. We'd booked the same driver and bus so all stocked up on stemetil in preparation for a rough ride. Unfortunately we lacked enough sick bags to go around, and after half an hour or so in the diesel scented rollercoaster ride at high speed no-one was looking happy. One girl had managed to discreetly fill her vomit back...which she was generously willing to share with others who needed it. Another eventually shouted to the driver to stop and shot out of the bus into the driving rain to throw up on the side of the road. I rapidly followed her and sat on the side of the bus while another girl got halfway out desperate for a wee only to find nettles everywhere and head back into the bus trying not to laugh at the vomiters for fear of peeing everywhere. We were an awful sorry bunch when we fell out of the bus at Knock airport, soaking wet and smelling of vomit and chewing gum.

I'm really glad I got to see the bride and groom on their big day, but I can't help feeling that Maria really let me down. I had such faith in her, she tells us all often enough that everything's great and well...it kind of wasn't great. More a bit crap really. So next time I think I can travel alone, without any support I'll have to remember Maria and her magical misleading missives. 





*Apologies to the people of Kerry who I'm sure are all very nice

Tonight's The Night! Wheelchair For Kali Gig, Panache, Hoylake

It's the big gig tonight! I'm very excited. In part because I can't remember the last time I had a night out. Well...a night out that I didn't fall asleep into my dinner over by 8pm! My lovely neighbour Caroline England is providing the entertainment and is always worth making the time to go and listen to. If that's not enough we have raffle prizes and some extra special auction prizes.

 

For all you Coronation Street fans out there the first prize in the auction is a tour of the Coronation Street set, pretty much the last chance to see the cobbles before Corrie moves to it's new location in Salford. Your tour guide will be the wonderful Julie Hesmondhalgh who plays Hayley Cropper and should give you lots of chances to bump into cast members. Thanks SO much to Julie for kindly donating this prize for the auction!



Our second prize is a fabulous family (or individual) portrait session with Colin McPherson, one of the North Wests most acclaimed photographers and a wonderful neighbour.

To place your bids text CORRIE 07831 838717 (minimum bid £100) or PHOTO to 07831 838717 (minimum bid £50)

Please note the prizes do not include travel to and from the Coronation St set, and the photo prize is only valid in the CH or L postcodes.

If The #NHS Won't Buy Kali A New Wheelchair...We Will!

Once again my fantastic neighbours have come to the rescue and solved the dilemma of how to fundraise whilst being on means tested benefits by setting up a paypal account themselves. This means the money doesn't have to go through my bank account and avoids any potential issues with the DWP as the wheelchair is then a gift.

So, on March 17th there will be a fundraising gig at Panache in Hoylake which has it's own facebook page here. There's all sorts of background information about why I need an electric wheelchair and why I don't meet the NHS criteria here, here, here and here. The gig is open to anyone who wants to attend and I'm getting quite excited about the idea of being well enough to actually go out for an evening...the last time I can recall being sometime in October last year...

The best 'guesstimate' I could get for the price of a customised wheelchair is approximately £6000. As it's a guesstimate I might be lucky and find it's only £5000 but equally it could potentially be £10,000 - I won't know until the full assessment on the 5th of March. Whilst there are cheaper electric wheelchairs available, £2000 odd isn't a cheap option, so I've decided its better to wait until I can afford a more expensive customised chair which will hopefully last me many years, instead of a cheaper chair I'd need to replace within a couple.

For the record, I hate having to do this - asking other people for money to fund a wheelchair feels like begging. Its humiliating and embarrassing. That's why my community stepping in to organise this is so wonderful, not only does it reduce the practical burden on me, but the emotional too. So, if any of you would like to help contribute, you'll have my thanks and eternal gratitude for being part of a whole group of people helping me to focus on increased independence, not continued dependence.






Big Society Bureaucracy

As anyone who follows my blog or twitter already knows...I have the most amazing neighbours ever! There's a pile of crockery sitting on top of my microwave as I type, the different patterns showing just how many people have pitched in to help while I've been so poorly this winter. One lady had already declared her intention to run a 10k later this year and help fundraise towards my wheelchair, and now others are organising a fundraising gig to be held in a local bar on March 17th. Knowing me well, the person setting up the gig even made sure to tell me I didn't have to go if I didn't feel well enough! We're the kind of community that Cameron has tried so hard to define with his 'big society' and failed to do so. Which is perhaps partly because it's micro communities not big societies which work in this way. But I digress into rambling. Again. 

So, we've got the venue, the talent, the organisation, and the gig is good to go. Where we've stalled is the financial practicalities. It's not possible to use sites like justgiving without being linked to a registered charity to receive the money. It's also not possible for me to have the money put directly into my bank account because I'm in receipt of means tested benefits. So, I tried to get in touch with the DWP to see how to do this officially as it is technically possible to receive money for a specific purpose such as this without it being considered income. Technically, as I can't find anyone who actually knows how to do this.

First I tried the DWP Press Office on twitter. They didn't reply. So then I tried the local Jobcentre department who oversee income support. They didn't have a clue, which is understandable as it's far from a routine enquiry. After that I thought to try my Disability Employment Advisor. She didn't know either, but was able to tell me that the Income Support department had tried to contact me to say they didn't know...and made a note on my file which said 'treat as income'. I'm not thinking about the possibility of that note triggering a benefits investigation, particularly as I've already just been through a benefits investigation*. After a more in depth conversation with the DEA we decided the best thing to do would be for me to write to the DWP explaining the fundraising and copy my DEA into the letter because then if there were any problems later on I would know where a record of the letter had been filed.

So theoretically, all I have to do now is set up a paypal account to receive the funds. Except...this is the DWP, I'm on means tested benefits and I'm not confident with that uncertainty. I don't want to accidentally do something wrong then find out later when it's too late that it's classed as benefit fraud. I just want my wheelchair and to be able to enjoy how amazing it is that my community want to help support me in this way.

One suggestion was that the wheelchair appeal itself could be set up as a registered charity. I'm not sure whether such an appeal would satisfy the charitable requirements, but I do know how much work is involved in setting up a charity, and that I don't have the time or energy to do that. Another suggestion has been to find an established charity who are willing to have all the fundraising money donated directly to them and then pay for the wheelchair themselves. I'm not sure whether that would satisfy the charities accountants terribly well either.

So, I'm a bit stuck. I know the wheelchair will cost somewhere in the region of £6000. I have all this incredible support to help me raise that money....and so far nowhere I can send that money to be donated without possibly accidentally committing benefit fraud. This is where hopefully the collective knowledge of t'interwebs comes in... I'm hoping one of my readers might know exactly which form I have to fill in to let the DWP know that this money is for disabled specific stuff and not income, or what the DWP call this so the local jobcentre staff know what to look up on their computers. Or perhaps there's another way that this kind of fundraising can be done...

If anyone wants to come to the gig, I'll make sure details go up soon as available, but for now a preview to whet your appetite.



*which showed, unsurprisingly, that I'm claiming all my benefits genuinely, legitemately and not doing anything wrong.

Rozz & Friends Go The Extra 131 Miles For Ehlers Danlos Syndrome


It's no wonder politicians are ignorant about the trials facing the disabled traveller

Thanks to the Guardian's Joe Public blog for publishing the second part of my 'ability to mobilise' trip to London here

Welfare Bill Ignores Reality Of Disability

Thanks to Society Guardian who've published my 'ability to mobilise' blog on their Joe Public site, here 

Please do share this link anywhere you can - explaining the kind of obstacles and barriers we have to overcome is a vital part of explaining to politicians and the public why benefits such as DLA should not be cut, and the consequences of doing so.

Ability To 'Mobilise'

One of the justifications for the proposed personal independence payment is that there is less of an need to supply a disabled people with cash for mobility costs now that we have the disability discrimination act to ensure laws governing access and the NHS to provide wheelchairs. So, instead of someone’s ability to walk, their ability to ‘mobilise’ will be considered. 

Today I am trying to book a train ticket to London for the 28th of March.  I wish to attend a meeting about potential amendments to the welfare reform bill in the House of Commons.  Fortunately the timing of the meeting means that even from Liverpool I can travel back and forth in one day if I take the train.  You might expect those laws against discrimination and ensuring access to mean that booking a trip to London travelling by train would be easy.  So far today I’ve spent over 2 hours trying to organise this trip to London and have yet to book a ticket.

It all seemed so simple: My plan was to drive to Liverpool with my mobility scooter which my Motability car is equipped to carry, park and use the scooter to travel by train to London with and drive home late evening. Use a ticket booking website and make a phone call to check about access and assistance. Except when it comes to disability access it’s never straightforward.  I spent some time selecting which train times would work, looking at prices, working out where to leave my car then decided which trains to catch, and found the phone number for the operator, Virgin trains to check the access requirements.

That was when it became really complicated, trains are accessible to wheelchairs including power wheelchairs, however mobility scooters are only allowed on some trains.  Virgin trains* only allow the three wheel type scooter as they do not have room for four wheeled scooters to turn.  They also do not have storage room so that a scooter can be stowed away from the seating area which would enable many mobility scooter users to travel independently by train as they tend to have some, limited mobility.  Despite checking and rechecking the various different regulations it seems that mobility scooters are quite commonly prohibited on trains.

So what’s the problem?  After all I do have a wheelchair.  Unfortunately I only have an attendant wheelchair as I am unable to self propel the traditional Manual wheelchair, which means that to use my wheelchair I have to have someone with me to push me.  I’m not entitled to a care package from my local authority, despite being disabled enough to receive high rates of DLA for care and mobility, so any support must be paid for from my disability living allowance care component which already pays to fund a private carer twice a week, specialist physio not available on the NHS, and myriad other additional disability costs.  Paying for a PA for the day plus an extra ticket on the train is prohibitively expensive.  Finding a friend to act as a PA may be possible but the meeting is held on Monday and most of my friends are in fulltime employment. Despite being Big Society fans the realities of mortgages, bills and life means however much they’d love to spend a day taking me to London their own employers just don’t feel the same. Funny that.

I am currently on a waiting list for an NHS Power wheelchair, I was referred before Christmas 2010 and I am still waiting to hear when my assessment at home will be.  Although I can’t self propel a traditional Manual wheelchair, I don’t technically meet the rules of eligibility for NHS Power wheelchairs.  In most areas an NHS Power wheelchair will only be supplied to people who are unable to walk or self propel a Manual wheelchair around their own homes.  If that’s the case, once the individual reaches the top of the waiting list they will be supplied with an indoor powerchair only for an initial period of six months before being considered for a powerchair that is capable of going outdoors as well as indoors.  The reason I don’t technically meet the requirements is because although my joints are too weak to self propel a Manual wheelchair I do have some, albeit limited mobility, particularly in my own home and wish to preserve its for as long as possible.

Instead of a wheelchair like many people in my position I use a powered mobility scooter.  They tend to cost less money, are available more readily second hand and require less specialist assessment to ensure they are appropriate to individual needs.  They tend to be used outdoors only preserving the ability to mobilize within the person’s own home and limiting the amount of work that needs to be done to make a home accessible.  I could use my DLA mobility component to fund a power wheelchair but it’s already committed to funding  a vehicle with a hoist so that I can use my mobility scooter independently, and if I ever become entitled to a powerchair would also be able to carry that.  

So I’m left facing the following options;

Find a friend who is free to take me to London and act as my PA. Fund their ticket and day. 

Find someone in London (who I won’t know) who is willing to volunteer their time to act as my PA for the day and travel with my attendant wheelchair

Share a friend’s PA, although we are travelling on separate trains and said PA would then need to assist 2 wheelchair users, pushing one of us to get back across rush hour London for a train. 
 
Hire a powerwheelchair locally and use that to travel independently. 

Option 4 is the most practical, I’m a member of Shopmobility in Liverpool and can hire a powerchair for a week for £40, plus a refundable £50 deposit. Unfortunately, despite my car having an electric hoist to lift my mobility scooter, a hired wheelchair won’t have the fixings needed by the hoist so that makes travelling to and from Liverpool complicated. I will have to find someone to drive me to Liverpool (about 25 minutes, including tunnel tolls each way) so that I can be dropped off at shopmobility, collect the powerchair and use the local trains to travel home, probably needing to book assistance in advance. I’d then be able to use the local train to travel to Liverpool, then London in the powerchair independently but I would have to fund an accessible taxi for the return journey home as it will be late at night. Hiring and returning the powerchair on the same day is not a practical option unfortunately. Then, finally I will have to travel back to Liverpool using the local train service, return the powerchair and find someone who’s willing to collect and drive me home – again likely meaning two sets of tunnel tolls. 

The initial cost of travelling to London as an able bodied person would have been approximately £61 plus whatever travel cards cost. Instead, as a disabled person it will cost me;

£40 wheelchair hire
£50 deposit (refundable but must be provided upfront)
£15 (approx.) Local train journeys to bring hired wheelchair back & forth
£6 tunnel tolls
£35-40 Accessible taxi
£? Taxi’s in London
£65 (approx.) Train fare

Meaning that although I will get the £50 deposit back I’ll have to find approximately £250 in advance to fund a day trip to London for a meeting. One week’s care component of high rate DLA is £70 (approx.) The total amount of time I've spent trying to sort this out is approaching 5 hours and I still haven't managed to secure my plans enough to be able to book a train ticket. 

So much for ‘mobilising’ Perhaps Ms Miller will do her Big Society duty and volunteer to drive me to London herself?

*Please Note: This is a problem common to all train companies and not specific to Virgin trains.

Someday, somehow, someway...

Goodness life is busy at the moment. It's all great and very exciting and I feel moaning about it makes me sound like a right twat. But, this is my blog and I'll moan if I want to. And also to be fair, I am a right twat. So consider yourself officially warned; moaning ahead.

Alongside the excitement of meetings with the leader of Wirral Council, articles in or featured by The Guardian, the huge success of One Month Before Heartbreak and the BendyVan I can't shake a dual sense of fear and frustration. Fear because what I'm doing is very visible and could lead to accusations of benefit scrounging from those subscribing to the Nadine Dorries school of social welfare, and frustration because work that pays is oh so very close, so close I can smell it, but can't reach it to taste it.

Yesterday I went to get the final adjustments made to BendyVan so I can use BendyBus independently. It's a massive improvement on the mobility situation I previously had so again I feel like an ungrateful scrounging twat to moan. While I was at the mobility place I got to try out the type of wheelchair I've been dreaming about for months - a power assisted chair. Just before christmas I finally caved to the NHS wheelchair services and agreed to be assessed for a fulltime power chair. Actually I only agreed because Roland promised he'd get me a shed and put the wheelchair in it so I didn't have to fall over it in my flat, but that's beside the point. My flat is beautifully compact and well arranged so it's only ever a few steps to anywhere meaning I'd find it much harder to use a powerchair in here as the dislocations from transferring all the time will do more harm than the staggering dislocations. But, as I've been whinging about for years, the NHS regulations for the provision of powerchairs state that only someone who needs to use a chair full time indoors will be considered for one which goes outdoors, and only after using a chair fulltime indoors for a minimum of six months. What you're supposed to do about going to work or in any way having a life during that six months I've no idea and don't even start me on the waiting times. Given that powerchairs are only technically issued to people completely immobile in their own homes it seems a bit bizarre to have waiting lists of more than a week or so. I don't strictly fit into that criteria but if I did it would mean remaining in hospital or requiring a vastly more expensive care package from the local authority while I waited for the powerchair which costs less than both those things. I did say don't start me! 

So we all get the picture. I don't want an indoor powerchair, don't need an indoor powerchair and don't see why I should have to further limit my mobility just to comply with an NHS rule. However, I do need an outdoor powerchair of some description. Deathwalks are all well and good but it's not a practical form of getting around and my ability to dislocate any joint without even drawing breath means a traditional manual chair is out of the question. Without a suitable wheelchair that possibility of paid work remains an impossible dream, one of the biggest problems I had when I was working was that just going back and forth to the toilet at work was too much walking. Anyway, back to the point which was that I finally got to try out a power assisted chair and oh my, it was lovely. I'd sleep with it if I could. Or the bloke who was demonstrating it for me, but if push came to shove the chair would win. Sorry sexy wheelchair man. 

The big flaw in my dream of making love to power assisted wheels on a regular basis is the cost. Even going with the less expensive version, to get the wheels and a 'not amazing but decent' wheelchair frame is going to cost in the region of £4000. My mobility allowance is already committed to motability so I can't use that and the NHS won't pay for this type of chair. If I was in work I could apply to Access to Work for funding (before it's all cut) but I'm not in work and realistically even if I found a job I could do, with an employer willing to take a chance on someone with a horrendous sickness record, no prospect of improving that and likelihood to be floating round Jupiter somewhere on a morphine cloud most days, to then have to say please wait for me to start the job until Access to Work have assessed me, gone away, made a decision then ordered the wheelchair and it's turned up isn't likely to encourage a job offer. Access to Work were so slow supplying the equipment when I last worked that I'd had to leave through being too sick to work before half of it turned up. 

Assuming I could find some way such as charitable fundin around the wheelchair dilemma there are other practical barriers to work. For example today, even though I've got a blinging new BendyVan, BendyBus and BendyHoist I can't use any of it as I don't have enough spoons to control such equipment safely. I don't qualify for local authority care as my needs are classed as 'moderate' a category the majority of local authorities no longer provide support to. I need help with all the basics, washing, dressing, getting around, making food, reducing dislocations and not choking to death being high up the list but those needs are not sufficient for a care package. That's fair enough, times are hard, a line has to be drawn somewhere and although I need help with all those activities to stop me dislocating, falling, increasing pain and overall disability unlike many people I can actually do those activities in my own special 'life on the edge' way. 

But I can't do all those things and work. It's one or the other. Times are hard, further cuts have to be made and we all have to tighten our belts. But whatever incentives are put into place, whatever benefits are cut back, no matter how difficult it is to claim, unless these other obstacles change, those sick and disabled people like me who could do some work, who want to do some work will continue being prevented from doing so because these kinds of barriers are insurmountable.


Behind The Scenes

I think I'm having a breakdown. Sounds dramatic doesn't it? To be frank, it feels rather dramatic too. I'm physically disabled and usually, aside from the psychological issues commonly found amongst those misdiagnosed as malingering attention seekers I don't usually have any significant mental health problems. But at the moment I do. 

I started to get more sick than usual a few weeks ago. Mid The Broken Of Britain launch I was hugely optimistic that for me personally, things were coming together on the work front and that the prospect of being able to work from home was a realistic one. A week of putting in the equivalent of full time hours, all work done either from my bed or lying on the sofa made it very obvious that it wasn't a realistic plan, although I am still hopeful about working part time from home. Fortunately I figured this out for myself before my friends had to intervene, but I've still had several stern lectures about how working from bed is not resting and one friend quite firmly informed me that if I did not stop he would be coming round and removing my laptop to enforce rest. I stopped. Vomiting and diaorrhea are difficult enough for all of us to deal with, but D&V for hours all night, every night tipped me over the edge. I could see the shock on my GP's face when I saw him last week even before he expressed his concern about the amounts of facial weakness and general rubbishness I was exhibiting. I have gastritis again, connective tissue disorders being one of the trigger causes. 

Despite tripling the dose of omeprazole I take the D&V has continued. So has the excruiciating upper abdominal pain. On the upside I do now have a really pretty collection of empty Gaviscon bottles, I'm swigging it straight from the bottle like a low class alcoholic and waiting to hear back from my GP about what to do next. I've had gastritis before and it's pretty horrible, but the additional impact of stress upon it is not pretty.

It would all be much easier without having to deal with the bureaucratic nonsense hidden from healthy people. The stress of my DLA reapplication is still hanging over me, my current award expires at the end of this month. This morning I phoned the DWP to see how things were progressing, as if the award is not renewed in time all my other benefits will be dramatically reduced until it is. DWP staff get a terrible press, but apart from 2 incidents which spring to mind I've always been treated kindly and respectfully in my dealings with them. I'd particularly like to thank Gemma for taking the time to check my claim this morning and to reassure me that it is with the decision maker so likely to be decided upon before my current award ends. She was also able to reassure me that there has been no request for additional information as I provided statements from my physiotherapist, my carer and my policeman friend as well as my GP's part of the form so a decision is likely to be made without my needing a medical.

I've had to avoid the continuing news about cuts to benefits, but yesterday it finally dawned on me that the reduction in Local Housing Allowance from 50% of average area rent to 30% of average area rent will put me at higher risk for homelessness than I'd previously thought. I'm very fortunate, I am educated and privileged and have friends who will not allow me to end up on the streets. Even with that security blanket I'm terrified. My current Local Housing Allowance is paid at £90.90 per week, and leaves me with approximately £80 rent shortfall to make up each month from my other benefits. If my calculations are correct, which I cannot bear to check as I want to believe I'm wrong, then my LHA will drop to £54.30 a week when the rate is changed to 30% of local rent. That will mean my rent shortfall increases from approximately £80 per month to nearly £250 per month. My need to be wrong on this is preventing me from confirming these details and I become hysterical every time I see Grant Shapps on TV insisting that it is wrong to pay £21, 000 a year in Housing Benefit.Whether or not it is wrong to do so is being used as a smokescreen to hide the true impact of the cuts to Housing Benefit.

Over the weekend I received a letter from 'Choose and Book' reminding me to make an appointment. Unfortunately I haven't received the first letter from C&B with a password and details so entered into one of those Kafkaesque bureaucratic nonsenses when I tried to phone for an appointment this morning. I spoke to C&B who informed me that without a password they couldn't make any appointment. I begged them to find a way around this, or to ask for an appointment to be made directly through my local hospital, but neither was possible. The only way I can make an appointment is to phone my GP's practice and they will have to provide the details of the password taking up their time and mine. Then I have to phone C&B back and will be able to make an appointment. Hopefully. As last time I tried to use C&B there were no available appointments, clinics or doctors and so I just gave up and threw the referral away. I'm tempted to do the same now but have no rheumatologist and desperately need specialist input as does my GP to deal with the current health problems. So, having already phoned my GP practice this morning to try and make an appointment I will have to waste more of their time chasing up this issue. The phone call with C&B left me shaking and exhausted. Were I elderly, or perhaps not diagnosed with anything and unsure if I really needed to see a specialist I would have given up and not bothered.

I have abandoned any hope of getting an appropriate wheelchair from the NHS. It is too difficult and a battle I have no energy to fight. Fortunately a fellow blogger is kindly putting together an application to the Motability Trust to see if I can get a power wheelchair or scooter from their charity. It feels like begging, and as my considerate friend applying for me knows only too well, I would never have been able to write such an application for myself.

Things are so dire that I have found myself considering approaching Social Services to ask for a support package. I was already terrified of Social Services having personal experience that there is no situation Social Services can't make vastly worse, so it is indicative of my current desperation that I would even consider it. I lost my care package when the local authority rationed care to critical and substantial only under the previous Labour government and given that care is set to be even more tightly rationed I know that even if I could deal with the trauma and stress that goes hand in hand with being assessed by Social Services I will not qualify for any support.

Of course, an appropriate wheelchair, a care package and less hassle in aquiring support from the NHS would all combine to make it more likely I could work from home. But, in this austere climate of cuts none of those things will happen, and like many disabled people who long to work I am pushed further away from that aspiration.

If assisted suicide were available in the UK I would be seriously considering that as an option. Not because I want to die, or because my medical condition is so disabling I can't bear to live with it, neither of which could be further from the truth. But purely and simply because the stress and fear of navigating the system during the Coalition's bonfire of the benefits is more than I can bear.


NB: For health reasons I am still not able to check/respond to my email properly. Apologies for the delay in replying. If anyone wishes to reproduce this post elsewhere please feel free to do so so long as there is a proper link back to this original blog. 

Missing Out...Again


Today I deathwalked a longer distance than I've been able to manage in 12 months. To say I was jubilant when I arrived home is understating the case, ecstacy would be closer to the truth after a year of injury after injury, hideous Oxycontin withdrawal and many other setbacks, just to get back to a distance I could acheive without as much difficulty 18 months ago is incredible. 

I've only been home half an hour and that sense of excitement has been whipped from underneath me by a phone call from wheelchair services. I've written about this dilemma in the past, the rules governing wheelchair provision on the NHS are so surreal Dali would have shaken his head in bewilderment and wandered off to find something not in the 'too hard to think about' box. 
My Occupational Therapist at the Wheelchair Centre is a lovely lady and excellent OT. She's known me since I was in nappies and is very saddened by the situation I'm facing, but her hands are tied by the national rules governing wheelchair provision.

The rules state that no-one will be supplied a power chair on the NHS which is capable of being used outdoors until they have used a powerchair indoors for a minimum of six months. A rule, which might just possibly seem sensible in abstract to politicians with no understanding of disability or it's reluctance to be shoehorned into bureaucratic boxes but not to anyone else, particularly not the people falling outside of those boxes and missing out on vital services and equipment.

Living in a very small one bedroom flat with standard sized doorways I could maybe just about get a power wheelchair into my home, but it would only be possible because I'm physically so petite. Given that Ehlers Danlos Syndrome affects the entire body, the demands of getting into and out of a powerchair everytime I needed to move to another part of the flat would be equal to, if not worse than the demands of staggering around the flat, I'd just be trading one set of dislocations for another, equally painful and degenerative set.  The additional downside of using a wheelchair indoors would of course be a further, rapid deterioration in my overall condition, leading to more dislocations, more pain and more disability. Remaining a part time wheelchair user is optimum for my physical and mental health, the overall cost to the NHS and the benefits bill, but does not fit within the rules of the system.

BendyGirl sitting in her attendant wheelchair
I have an attendant wheelchair, the kind that can only be used if you have someone to push you. It's great, but means I can't go anywhere to use it unless I can find someone who's not busy and is both willing and able to push me around. It's also difficult socially as typically people walk or wheel side by side, and being in an attendant chair prevents that. I suspect it's one reason why small children get so fractious in pushchairs, being unable to see or properly speak to the person pushing you is conducive only to tantrums.

I am not entitled to a standard manual wheelchair as the system recognises that it would be dangerous for me to use one. I could attempt to persuade my GP to risk his professional reputation and a future negligence action by getting him to sign me as fit to use a self propelled wheelchair, but he should no more be put in that position than I should be put in the position of having to lie and say I would use a wheelchair full time indoors. If my GP were willing to claim that I'm capable of using a wheelchair I'm very obviously not, then I could obtain an NHS voucher and purchase a power assisted lightweight wheelchair myself, making up the rest of the cost out of my benefits. That is unlikely to happen, partly because my GP wouldn't deem me fit to use a self propel wheelchair and partly because the kind of lightweight, power assisted wheelchair I would need would be cost prohibitive.

It is possible to use High Rate Mobility Allowance to purchase a powered wheelchair...but not if you're already using that HRM to fund a car. I am currently not using my HRM for either, it goes into general living/travel expenses as I already had a car, but as I need to change my car to a more accessible vehicle, assuming there are no problems with my DLA reapplication the HRM will be committed fully to a vehicle leaving no money for a wheelchair. 

So, once again I'm back at square one. There is absolutely no doubt that an appropriate wheelchair would make it more likely for me to obtain paid work. Access to work is the scheme set up to provide specialist equipment to disabled people to enable them to work. Unfortunately one needs an actual job, or concrete job offer to use access to work, and I have neither. The 8 hours a week I'll be doing from my sofa on a voluntary basis absolutely won't count. 

I have three options. One; the situation remains as it is now, hopefully improved if BendyBus ever gets it's act together enough to leave the care of mechanics. Two; I lie. To my GP, to my consultants, to the wheelchair centre and claim I will use a power wheelchair full time indoors for six months so that they eventually consider me for a powerchair which works both outdoors and indoors. Three; I try to navigate the maze of charities and beg for funding, unlikely to be secured as EDS is not important enough a condition to have rich and powerful charitable representation. 

The years of not being diagnosed and accused of being a liar have left me with a stubborn determination to cling to the truth at all costs. I am just not willing to put myself in a position where I have to lie to the clinicians caring for me, even if that lie weren't completely detrimental to all concerned. I don't have the energy or the mental strength I'd need to go cap in hand to a round of charities, which leaves option one as the only choice.

More than three years on...I'm still missing out.




Also posted as a guest post at;
Shoutaboutit's blog
A Very British Dude

It's all in the name!

I lay in bed last night feeling quite sorry for myself, in fact, sorry enough for a tear to slide down my cheek. But then, as tends to happen when tears arrive, my nose started to block up and I realised I was far too sorry for myself to deal with that. So that was the end of that. I decided I'd better be cheerful instead and look on the bright side of life. 

I have a BendyBus! What's not to like? Well...BendyBus has returned from the garage where it had been for almost a week...and broke down more times than I could count on the way home. I'm not sure if the garage were too busy to look at it properly or whether they just didn't know what's ailing BendyBus but they liberally applied WD40 and didn't charge me anything. Which was very nice of them as they did drive me home and the robbing bastards company contracted to provide NHS wheelchair services wanted a £40 call out fee for private work. On top of service charge, any parts oh and some labour too. Which they didn't provide an actual price for. Which also reminds me they still haven't come back to fix my NHS wheelchair. Private companies doing NHS work with taxpayers money. Aren't we all glad they do such a reliable job already they won't need to clean up their acts to bid for more of that lovely taxpayer money coming their way? I'd stamp my foot if I hadn't already learnt my lesson about that leading directly to dislocations. It's a definite flaw in the system that politicians don't receive similar direct consequences to force them to learn from their mistakes, and just think how much more entertaining PMQ's would be!

Garages and mobility companies be damned, I know what's wrong with the BendyBus. It was very obvious when I thought about it sensibly. BendyBus requires constant charging, energy, warmth and attention. It looks pretty, uncannily like a fully functioning mobility scooter that has nothing wrong with it. BendyBus tries it's absolute best to do as it's told...only to immediately run out of power any time it's asked to do something hard...like, say, moving. Then it collapses in a big bendy heap on the pavement wailing "you can't make me". It's even in the name. That's right, the BendyBus must have Ehlers Danlos Syndrome. There is no other possible cause. Batteries, chargers and loose connections be damned. 

Only I could end up with a mobility scooter with EDS; it's not like you can go to the shops and try to buy a scooter with it, they hide amongst all the fully functioning scooters, looking all shiny to convince the world their excellent health is the very reason to take them home. Then as soon as you're out the door it's collapse on the pavement in a big heap time. This is taking the bendy seeker gene to a whole new level. 

What with the BendyBus, the bendy seeker gene and the rest of my latest internet purchases it's probably for the best that I can't get out much at the moment. I appear to have taken inebriated online shopping to a whole new level. After the purchase of 6 bottles of mineral water heavier than myself caused by stoned reading of post apocalyptic swine flu literature I had thought I couldn't sink any lower* but this time I've outdone myself. I've bought a Onesie online. So now it's official. The BendyBus really is bendy and I am absolutely, definitely NEVER getting laid again. 


*In case anyone's interested they were very cheap and ConventGirl is still drinking the last of them as I had to give them to someone who could move the bottles out of my kitchen.

Bus Driver Refuses To Help Disabled Woman: MEN July 12th 2010


Bus driver refuses to help disabled woman. MEN July 12th 2010

A bus driver was caught on camera refusing to help a wheelchair-bound woman get off his single-decker.  Renu Duggal, an award-winning disability rights campaigner, has slammed the driver for ignoring her pleas to put a ramp out so she could get off the bus at Piccadilly.
She said the First bus driver said he could not operate the electronically-powered ramp because he had a 'bad back' and argued that it was not his legal duty. 

Her son Arjun, who was with her at the time, filmed the incident on his mobile phone. In the video, the driver can be seen covering his face with a timetable while a voice can be heard suggesting Renu be wheeled off backwards.

Eventually, people at the bus stop helped Arjun, 17, drag the wheelchair off.

Bosses at First have apologised and launched an inquiry.

Renu, 46, said: “I was very upset. It made me so sad. Why would you not attempt to help someone in a wheelchair? I’m fed up with getting treated like this.”  Renu, of Briarfield Road, Timperley, Altrincham, formed the Our Independence group to help disabled people make friends and won the Queen’s Award for Voluntary Service for her efforts. 

Renu went to get on the 135 service on Cheetham Hill Road.  The driver made no move to get out of his cabin to operate the ramp, so Arjun did it himself – and was criticised by the driver.
When the bus arrived at Piccadilly, Arjun asked the driver to put the ramp out but again he refused. Arjun said: “I’ve never met anyone so rude. I decided to film it then because otherwise he would’ve just got away with it.”

Department for Transport guidance states bus drivers ‘must, wherever reasonable, assist a wheelchair user or other disabled person if they ask’. It also says drivers ‘must make a boarding device available when a disabled person wants to get on or off’.

Squee!

I have a spanking, only been used 3 times before, new mobility scooter! For the bargain price of £150. I am a very happy BendyGirl! 

Especially as....my new Tempur mattress arrives on Monday. I don't have to pay the VAT so the mattress and scooter come to the price I had thought the mattress alone would be.

To make it even better, the scooter was donated to a local charity shop by a lady who volunteers there. They aren't allowed to accept electrical items so weren't sure what to do with it. My neighbour also volunteers there and got them to keep it for me. The lady who donated the scooter is happy it's going to me, and the money for it is all going towards the day care center for people with dementia. It's all grand. 

The only downside is I've had to leave the scooter at the charity shop for now while I get quotes from builders to sort out ramps etc. Unfortunately where my flat is means there's no easy way to do it, but all the money that was being saved for the scooter can be put towards building costs. Expect happy scooter photos when that happens. 

Thank you so, so much to everyone who helped me fund raise towards these items. I've been saving for ages but without your help I wouldn't have been able to buy the scooter and mattress for another few months at the least. Even if the building work takes a while I'll have the scooter in time for summer. 

Squee! 

Taking the care out of community

So I finally got round to phoning up the local authority's welfare rights department about being turned down for a community care grant.

I wish I'd not bothered wasting my time on the phone call, let alone applying for the community care grant in the first place.

It seems that the local welfare rights department won't assist with social fund decisions because they disagree that there is no right of appeal, only review for social fund applications. Whilst I agree that the no right of appeal is fundamentally wrong I think that welfare rights should be dealing with any welfare problem not just the one's they think they should. Particularly because this welfare rights department are part of the local authority.

The welfare rights 'expert' I spoke to advised me that none of the items I applied for on my community care grant will be covered by a community care grant. This is because the items I applied for are primarily medical and as such should legally be supplied by other state funded agencies. There is a chance I may get some funding for a mattress but no chance of getting funding for the specialist tempur mattress. The community care grant may provide funds for an averagely priced mattress as that is an essential item but the tempur mattress is needed for primarily medical reasons, ie to reduce my night time dislocating so that cost should apparently be funded from elsewhere. It seems community care grants will be refused for any item considered to be for 'medical' needs.

On my community care grant application I asked for help with the costs of a tempur mattress, a mobility scooter, ramps for access with the scooter, a storage shed for the scooter and specialist shower chair. I didn't expect to be funded for all of the items but I had hoped for some of the cost to be contributed by the social fund.

The mobility scooter is supposed to be funded out of the Disability Living Allowance High Rate Mobility Allowance, but like many disabled people I have found it more cost effective to use that money for living on. I simply can't afford to hand over approximately £170 a month for a vehicle. I'm very, very fortunate to have someone who wants to buy me a mobility scooter so avoiding that issue but I need to meet the cost of storage shed and ramps to be able to get that scooter in the first place. I could, as some have suggested, apply for an electric wheelchair instead but the rules on wheelchair provision via the NHS in my local authority state that I'd have to use that wheelchair indoors for a minimum of six months before I'd be eligible to even be considered for an outdoor chair. I live in a tiny one bedroom flat with no room for a power wheelchair, would need more ramps installed to use it and probably couldn't get a power chair through any of the inner doors even if I was willing to use a powerchair indoors and lose all the benefits of staying on my feet in my own home. Welfare rights would not assist with this problem as they are funded by the same local authority as the wheelchair service.

The only advice welfare rights gave to me was to approach social services to be reassessed for the ramps as they are responsible for adaptations to housing. Frankly I'd rather die. It sounds terribly dramatic but I've spent years getting over the damage caused to my life by incompetent and inappropriate assessments from social services and the potential benefit of getting some funding for ramps is simply not worth the problems social services are guaranteed to cause.

So, it's back to square one. My advice-don't become disabled in the UK, the bureaucracy will kill you long before any disability could. I don't suppose anyone wants to buy me a proper tempur mattress ?

Death.Walking

When I'm deathwalking and it really hurts, really really hurts, my mind is so clear ideas swirl and coalesce in perfection. Back home without such pain I lose them. I'd put something witty but I forgot that too, though it was definitely there waiting to be typed when the pain was most.

I never did go for that hip x-ray. After waiting a few days resting it seemed pointless, like most of the injuries Ehlers Danlos Syndrome causes the damage is to the soft tissue rather than the bones and doesn't show on x-ray. Having had many x-rays and doubtless more to come in my future I like to avoid them if at all possible. This time it has been possible, although I may need to have a scan at some point.

My hip is more unstable than it was before. After discussing things with my physiotherapist, J I am fairly sure I have torn the acetabular labrum in a posterior position. Usually my hip dislocates out to the side when I weight bear, but since the kerb step fail moment it's been dislocating out to the side before swinging back and dislocating. It feels like trying to walk on a femur locked into a permanent figure of eight movement. Tricky.

Next week I'm booked in for an hour and a half of physiotherapy. I'm not even thinking about the cost, it's pointless. The appointment is so lengthy because we plan to do various assessments so that a longer term rehab program can be worked out. Then I'll go for monthly physio appointments and work at the exercises myself. Much has been learnt in the past 5 years about physiotherapy for hypermobile people and how important 'brain retraining' is for bendies. The problems with proprioception experienced by hypermobile people are thought to be because of the additional joint movement. The joint is able to extend far beyond normal range and unlikely to be able to stay in a fixed position once it's there. This means the signals sent between muscles and brain can never get a true fix on the actual position of the joint, let alone the relative positions between body and inanimate objects. In practice this means many people with Ehlers Danlos Syndrome have comedy moment accidents. I've had to go to A&E and explain that yes, I really did walk face first into a lamp post, stone cold sober and yes, I really did swim face first into a wall.

There are reasons I put myself through all this torture. Various people have wondered why I don't have a power wheelchair. There are many reasons for that too, but even if I did have a suitable wheelchair or scooter I'd still go deathwalking. Using a wheelchair full time would mean my already weakened muscles and ligaments would weaken further, faster. The end result of that would be that I might have less hip dislocations from being on my feet, but I'd have more hip dislocations whilst sitting down. Having experienced both situations I'll put myself through any amount of deathwalking to stay on my feet part time. It may be a nightmare, but it's far less of a nightmare than the alternative. I also need to consider the fact that at some point in the future I will need bilateral hip replacements. The fear of repeatedly dislocating artificial hips keeps me awake nights. A long term physiotherapy program is the best chance I have of staying physically strong enough to enjoy life.

It's just a shame that kind of specialist physiotherapy or wheelchair provision isn't available on the NHS.

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
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