Today has been what my friends and I describe as one of my raggy doll days, and that in combination with some of the posts I've read recently over at the excellent Chewing the Fat has been making me think more about the language we use all the time, specifically though in relation to disability.
The title of my blog should be some indication to the way I view language, it is of course as EmmaK asked so early on in part ironic, but is also largely to do with the attitude I have towards negative language, that somehow, some part of me feels it vital to challenge all those negativities and make words usually considered to be shocking or derogatory insults into comfortable every day terms.
I am a cripple, a spaz, a spacker, a gimp, a muppet, a bendy freak, a genetic throwback, a raggy doll. I am a pixie, a gorgeous blonde, a sex kitten, a cherub with a devil's mind, a bendy girl, a bit of a hippie chick, an incisive mind. I am me.
What I am not and never will be is disabled. Sigh. Dis abled. Dis abled. Disconnected. Displaced. Disintegrated. DISTANT. I hate the word disabled. So why would I want to willingly use it about myself let alone every chose to think about myself that way? Don't get me wrong, if the situation demands it, I will use the D word to describe myself, have used it on this blog, but I hate it. Hate it, hate it, hate it. I only use it to enable other people. To give them something to understand. But it is not and never will be a term I would chose to use for myself. But those other words, words used to cause offence, still I know able to cause such offence for so many, they, they are the words I choose to describe myself. These are words with power to them, not the negative and to me oh so whiny preposition dis disabling by its very nature for any of these words, no these words have bite, they are good strong, colourful words to describe myself with. I am a cripple when in pain I struggle to walk, a spaz or a spacker for my clumsiness, my sheer inability to co-ordinate, a muppet for my daftness, my ability to forget or lose things at the drop of a hat, a raggy doll when I laugh and my muscles lose the ability to hold me up, causing me to drop to the floor in a hopeless helpless heap of giggles, a gimp when I am covered in bandages, a genetic throwback my whimsical wander back to times when humans were dead by the age of 30 and perhaps such unusual bodies those we with EDS have were of some evolutionary advantage, the bendy freak bit should be obvious by now. Really.
Not a single one of those words has any power to hurt me. I live in a world of sick warped humour, and it's a good place to be.
Somewhere always in the back of my mind there is a nagging sense of underlying fear. From what I know this sense of fear is common to all those genuinely claiming state benefits. Today is not a particularly bad day, but not a particularly good day either, but for some reason the nagging sense of fear is stronger than usual.
My shoulder, taped into place by Princess Fairy Toes has remained in place overnight, but grumbles ominously whenever I try to move my arm, and already the tape is falling off. Really it should be held in place in a sling for a week, allowing whatever is grinding within the joint to heal, but that for me currently is an impossibility. Since the fuckwit social worker decided there was clearly no need for me to receive any support my body is crumbling under the strain. To wear a sling would throw my body further off balance, making anything and everything I do even more dangerous.
Earlier in the week I ordered a grocery delivery so I would only have to shop for a few basic, and light essentials over the next 10 days or so. Typically with such orders a few items were missing, not in stock, for most people I assume a minor irritation, but for someone in my position currently a major nightmare. The items missing were all wheat free bread products, and I am about to completely run out. This means I have no choice but to make the 10 minute drive to the nearest supermarket that produces this range and hope they have some in stock. I am afraid. I am afraid that my body is simply not going to manage the amount of effort required to wash, wash hair, dress, make breakfast, eat, drive, get from car to supermarket, find required food items, push the trolley, stand in the queue, pay, get back to the car, drive back home, get the shopping out of the car, it and myself into the house, and all without redislocating my left shoulder, let alone any of my other joints, like my knees or hips. I am afraid the supermarket will as is common not have any of the products in stock and I will have to order them and then return, something that has proved impossible to do by phone in the past.
I am afraid that this is August, and winter is yet to come.
I awake to my shoulder screaming for attention. It's fully dislocated itself again and is refusing to reduce. I know of old there is no point in my seeking emergency medical attention as last time I did so even A&E were unable to reduce it for me. If it remains this way eventually I will be forced to make even more difficult decisions and somehow find the money from my benefits to pay out for specialist private physiotherapy, the NHS in its infinite wisdom having just discharged me from their physiotherapy services much to the reluctance of the actual physiotherapist as there is no room in the current NHS for patients requiring on going therapy for chronic problems unable to 'get better' for the endless reams of form filling targets.
This time unlike the last I happen to know what the trigger for such a substantial dislocation is. It's now been several months since social services decided despite the constant dislocations I experience and living alone with no family back up that there was no need for me to receive any care or support services from them and removed all the services and funding I'd received to that point. It won't shock anyone to hear my local authority are broke and going through a process of 'reviewing' all care packages whereby most people are ending up with if they are lucky vastly reduced packages and if not, nothing at all. I could complain, but only complain as there is no actual appeals process, but I simply cannot face the trauma and destruction that this would cause to my life to get back a service that was so substandard and at times abusive that I am as yet undecided.
So, several months of having to find ways to cope with the daily tasks the social worker adamantly refused to see how fragile and unstable joints would cause any problem with has predictably put massive strain on my body. I have been in some respects incredibly lucky, unlike the dark days before I was diagnosed I now have friends, a new and wondrous experience to me, friends who want to help for no other reason than they care for me as I for them, but of course there is a vast gulf between such support and that needed day to day. There's an even bigger gulf between that and what I will admit to needing but that is a different issue.
On Saturday night, I had as I mentioned a rare night out. It's now monday morning, and I've been unable to leave the house since then. I have to get the cat to the vet today, but I'm fortunate to go to a lovely vet practice where they come out to wherever I've parked and carry the cat into the building and later back out. Usually a neighbour assists at this end. The trip to the vet will be I suspect the only time I manage to leave the house today. It will also be exceedingly painful even with assistance. I'm still paying for my night out, for those few precious hours of pretending to be like everyone else, pretending not to be in so much pain, for smoking enough cannabis to allow me to be out with my friends, to sit on hard uncomfortable chairs, and even for a few joyous, blissful wonderful minutes to dance, stoned enough to be able to ignore the warning signs my body was giving me, yet enjoying far too much the simple joy of feeling the music flood through my body as I writhed to the beat, eyes closed, spinning ultra violet poi above my head in a mesmeric pattern.
It was worth it. I was only out for a few hours, danced for maybe 15 minutes at most, broken up throughout the night into smaller amounts, and for the last time had to be held up by my friend but it was worth it. It was worth the pain yesterday when I could feel my hips screaming at me. Worth the pain I can feel in my shoulder now as the bones grind and scrape over each other. Worth being unable to even walk out of the venue and having to be carried out by my friends my hips by that point so unstable I could not support my body. Worth the constant nagging fear of being spied upon by the DWP, that those few, rare short hours of freedom would trigger an investigation to remove benefits, ignoring the consequences those hours bring. Worth potentially not being able to leave the house for the rest of this week. Worth not being able to feed myself. Worth all that and more for a few minutes where I could forget and just be.
