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.