Tag: disability

BBC News – Paralympics 2012: Is it OK to call the athletes brave?

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BBC News – Paralympics 2012: Is it OK to call the athletes brave?.

Was the BBC brave, or stupid, to cover this?

What a minefield. The only people who care about this are people who won’t like whatever language you chose to use. Most disabled people, as far as I’m aware are either confused by the debate on language, or non-plussed by it. If you asked a focus group of disabled people of varying ages and disabilities which words and phrases they least liked, I bet every single person would have different answers.

 

While we’re on the subject, I’ve heard various bodies on channel 4 use every one of the phrases they were apparently supposed to avoid. I’ve also heard Ade Adepetan go out of his way to ask what someone “suffers from” and he’s a disabled person himself! That’s part of why this is such a minefield. I notice also that it’s Damon Rose of Ouch who has written the article. One wonders why he bothered, now ‘Ouch’ is reduced to a miniscule presence on the BBC news team. Once upon a time, this article would have been the subject of one of his editorials and  would have been discussed with relish, by a whole stream of disabled people of varying ages and backgrounds on the now defunct BBC message boards. As it is, the article will disappear with barely a whimper, and whose fault is that?!

Never mind the politics, what about the language?

As for the language of the article itself, like I say, I’ve heard channel 4  commentators use every one of those phrases on the list of words best avoided, repeatedly. One wonders whether they ever read the document. I doubt they care, they’ll just be happy to have snatched the Paralympics coverage from the jaws of the once smug BBC.

It’s wrong to call the athletes ‘brave’, ‘inspirational’ ‘suffers from’, ‘sufferrer’, ‘victim of’, ‘normal/abnormal’. Firstly, who decides what is normal or abnormal? it’s all relative depending on your own experience. What is normal for me as a disabled person will be abnormal to someone else. Things like falling being as natural as breathing, is true for me, but completely abnormal for someone else. To say ‘suffers from,’ ‘sufferer’ or ‘victim of’ makes us sound passive, like vegetables as if we have no life. We are not sufferers or victims, we are people who are living our lives in ways that are ‘normal’ for us, against the backdrop of the pigeon holes the Government, the DWP, the media and medical records try to squeeze us into.

The days that dared to change my already complex life…

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The preface to the days that changed my life… 

 
Thank you to my friend Tanya for her searingly honest and thought-provoking post on the day that changed her life. You can read about it here. I’d highly recommend it. If you’re someone who is easily prone to tears I’d keep the tissues handy. Tanya’s post gave me the inspiration for this one. There are several days which have changed the course of my adult life, rather than just one. (There were several incidents as a child which had a profound effect on my life, including my journey to faith at the age of nine. However none of that is my focus here, but is reserved for later posts.)
 

Day 1: The day I got ‘chucked out’ of home

 Fortunately for me, this isn’t actually true,.It’s just something of a family joke. My mum’s always said one of the best things she’s ever done is to encourage both me and my brother to leave home. It’s part of what’s made me so independent now. My days at Stirling University seem so far away. If this was a film of my life, the camera would have to rewind 11 years to my first day at uni! I cannot believe it’s that long. It makes me feel so old. And yet, I remember the first days of independence so clearly. The feelings of being lost, both in the sense of not having friends, and also feeling physically lost. My sense of direction has never been my strong point. My brother got the full measure of that when God handed it out.
When I look back now, there are so many things I wish I’d done differently. For example, I wish I’d joined more clubs and societies. The only one I ever joined was the Christian Union (CU), though by the end I guess I’d had quite an impact on it by the time I’d left. There are quite a few things that happened at uni which still affect me now. For starters, I was in and out of hospital a few times, which impacted on my studies. The situation was not resolved until I was 25 but more of that later.
The other significant thing that happened at uni was that three full years into my degree, I failed. This time I was unceremoniously kicked off the course. I’d been trying to complete a BEd alongside a regular arts degree. I wasn’t much good at it, though I remember my tutors saying that they always praised my values highly as these were always well established, and I still hold to them now. It took me a long time to get over the loss, even though I’ve admitted I was not good at teaching. There are incidents coming back to me now which I thought I’d consigned to the dustbin of history. Quick girl, keep typing, get onto the next screen shot in your head. This one’s far too painful. I still remember now the sense of loss. It hit my parents so hard. They hadn’t realised the road would come to an end so abruptly. They’d always thought I’d get there somehow like I always did. Not this time though. I remember it hitting my Dad particularly hard, as my brother messed around in his first couple of years at uni, and still sailed through. I’d worked so hard and failed.
I did do an extra term to finish off a bog-standard bachelor of arts degree. Leaving things half done was not my style. That last semester was such a disaster though. The mess I made of relationships with my flatmates might have had eternal consequences. I still think About it sometimes now and pray that it’s not true, that they’ve found Jesus other ways, as they didn’t find him through me. I was a mess that term. Looking back, the bottom had just fell out of my world. I didn’t make things any easier for myself though. The memories are all slamming into one another now. Lets move on.
I then had to spend a difficult nine months at home thinking and working out what God would have me do with my life. I was offered two roads — an English one and a Scottish one. I picked the former, and packed my bags again. Before that though, I have a distinct memory of my Dad talking to me in the car and saying things like “I want to talk to you very seriously now. I want you to think long and hard about Leeds. What if you get ill, you’re doctors in Aberdeen. If you’re at Aberdeen you’re not far away, but if you’re in Leeds and have a disaster, we can’t get to you”.

Day 2: The move to the ‘wrong’ side of the border!!

Well, I did move to Leeds. The loneliness and sense of loss reared it’s head again. I cried for an hour SOLID about missing home, and had I done the wrong thing. It felt so far away. I did make it through that year. Now it feels like I just scraped through. I’d do it all differently if I’d had the chance to start over. Well scrape through I did, with ‘just’ a pass. A masters, when I wasn’t supposed to have the mental capacity to finish primary school. When you think of it like that, it does sound like an awfully big deal. 
 

Day 3: the one with the operation… 

Again, I remember this like it were yesterday. November 2008, so a year after I’d scraped through the masters. I’d not been feeling well for quite some time, and had just been existing on the insides of plain baked potato, and white bread and butter, that sort of thing. I’d been in St Mary’s in Leeds having physiotherapy amongst other things, and had to have an emergency appt. at the hospital. They’d offered me an ambulance or a taxi there a few days before, but I hadn’t seen the need. It all came like a bolt from the blue. I remember sitting with doctor Sprakes, and him saying, “how would you feel about saying in hospital for a bit. I don’t think it would be a good idea to go home.” I said to him, do I have a choice? It’s not down to how I feel if you think I should be in here.
Fast forward a week, to ward 53, ward 59 as it was later called. I wasn’t getting any better, not even IV steroids were working, and Dr Everett said, “lets get a sensible surgeon in here.” Along comes Mr Saunders. Honest and straight forward to the point of being brutal. He told me a bag on my tummy would be a certainty, probably for ever, but at least for the short term. Wham, it hits me again. The familiar wall of emotion that I just have to cry out. The deep sense of loss, and the frenzied thoughts. I already had cerebral palsy and was finding it increasingly difficult to walk, never mind coping with a bag into which I poo, as well.
The day arrived. Barring a serious RTA, I was up. So, the accident never happened, so it was my turn to be centre of attention, not that I wanted it. I felt such fear on the way to theatre. I started to wail under my breath, as it’s always sounded when I’ve tried to sing. But had you been a fly on the wall, you’d have heard a hopelessly out of tune version of “my Jesus, my Saviour”. I remember being in the pre op room as well. Then trying a failing to find a vein. Then nothing. They wake me. I beg to be told if I have a feeding tube or just a bag. Just a bag, they say. It was no longer the worst case scenario. I breathe a sigh of relief. And so the rest of this day that changed my life is not quite over. I remember the sense of relief in the left hand side of my tummy– pain free. It had not been that way for months.
I only later learned of the enormity of that day. How touch and go it had been. How my heart rate was dropping and they’d had to halt my op, quickly, just as they who had delivered me all those years before had had to do. Mine was one of the ‘hellish’ operations my surgeon forgets, so bad it was, he had to be convinced it was he who had done the operation, and nearly fell off his chair when he remembered. My bowel had been so twisted and so scarred, it took them eight hours just to save my life, never mind do the rest of what they had scheduled. They’d saved my life, misson accomplished. My mum denies it was ever this serious, but she wasn’t in the very first meeting with the surgeon, or any of the subsequent appointments, so let’s leave it there.
 
I recovered remarkably quickly, given all I had been through. just 9 days after the operation, all that was keeping me in hospital was that I was struggling to cope with managing the bag on my tummy. Something I’ve struggled with for just over three years, and only gave up the actual changing of it fairly recently. Going back to how I was then, I cannot believe it was almost 4 years ago. What happened then, is something that’s happened a few times in my life. God has seen fit to partially heal me. No problems so far with scar tissue and no problems with the scar healing. It was so well healed, getting the staples out was agony. Someone had to hold me down while someone else took the staples out!
There was one nurse in particular I bonded with. Nurse and patient relationships are such an important part of recovery. This nurses calm demeanour and the way he coped with each of my emergencies, his quiet way of going about my care, and the way we’d always laugh and joke throughout was a big part of how well I recovered. I can see how the NHS is going and it’s a tragedy of massive proportions. Something Lansley never understood, and I think his predecessor understands even less, given how he hadn’t a clue about some things that stared him in the face. I’m in the ‘Jeremy Hunt as health minister is a disaster’ camp unless proved otherwise, but frankly I’m more likely to be proved right. If I’m wrong, and your someone that believes in the guy, if he gets it right, I’ll buy you a beer!
The days after were so difficult, and I’ve struggled for the last 3 years. I’ve never properly managed the bag on my tummy, but am so good at putting a face on things that everyone apart from my parents has thought otherwise. A couple of years back, someone’s nephew was going through a similar op to mine and I bolted out of the room in an emotional mess, instead of being there for them. I managed to pick up the pieces of that afterwards, but still wish I’d been able to be strong. My mum has always been so matter of fact about how I should be over it. It’s only now, four years later, that I feel there is now some distance between me and the operation. I still do have days now where I wonder what the thing is on my tummy and how I will care for it for the rest of my days on earth. For a very funny, honest account of what it’s like living with a bag, follow Wendy Lee on twitter and read her blog, she’s fabulous. 
 
 
 

Day 4: The one with the ‘wheelie chair’

 (If you’re still reading this now and haven’t given up the will to live, thank you!) One is a couple of years back. Am sat in a rehab consultant’s office, let’s call her doctor P.  I sit there, relaxed, thinking this will just be an ordinary review and I’ll be out in half an hour. I’d foolishly gone to the appointment on my own. However, at some point the room starts spinning, swirling round and round and I have no idea where I am. “…you need an electric wheelchair full time. It’s not the end. you’ll have more energy and be able to do more. it’s just that you are doing so much damage to your hips that if you carry on the way you are, you’ll need to start being hoisted in the next few years…”
Fast forward a couple of years, and I’m writing this with a laptop balanced precariously on my knee, with a chair of wheels surrounding me. The second the NHS had to offer, because  the first had so many faults it had to find it’s way back to the people who made it, as not even reps from that company could find the fault, they just fixed the same things as those contracted to service it. Normally you’re not provided with a chair when you can still stand, but the pain and fatigue was having such an impact on my life, there was no getting out of it. In fact, even with the chair, I’m dosed up on something I shall not name, but I’ve heard is addictive. Just something else I have to trust the Lord with.
I’m aware I haven’t mentioned Jesus much in this search of my soul. He’s always been there, even when I’ve let go of Him. I’m aware of the theology of overcoming, and am not sure how I feel about it. More of that in future posts, as I would like to talk to a few people about that one first. I’ve had some help recently to process everything that’s gone on in the last year. I got my electric wheelchair the middle of last September, and started having care two days later. Add to that the heaps of appointments I’ve had in the last year too. Not working is a full time job! And we come to…
 

Day 5..The joys of being cared for…

I’ve written about this in a previous post. It might be more than you can take to read it now. However, it is worth reading! This again, is something I’ve had to come to terms with, and is still not easy. It still gives me trials on an almost daily basis, partly because the office ‘crisis manages’ the situation rather than calmly planning the whole thing. However, I won’t say any more, because planning has never been one of my strong points either!

 

I’ve been privalidged to have so many opportunities to share the gospel with this lot, but even more than that, I’m privileged to call some of them friends, and the gospel sharing may be for later on. Some of them just need a friend right now. What is it about carers, that trauma just seems to follow almost all of them? Not one of them who comes through the door isn’t hurting about something or other, and brings that to the job. Enough said about that, I’m probably already in trouble.
I’m signing off for now, you’ll be relieved to know. Off to find my phone alarm and take my prescribed ‘sweeties’ as the noise will be bugging the neighbours right about now…

The one with the ‘curlywurly’

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An ordinary start, to an ordinary week!

Given the exertions of the previous week, a restful week this week would have been the sensible thing! Not a chance… It was such a long week that I can barely remember Monday. The two or perhaps three staff that are about to leave haven’t yet left, and still they needed to send a carer from another area to cover the respite sit/PA time. Fortunately, this one was lovely and allowed me the same flexibility I have with my regular carers. I bought my usual shopping including said ‘curlywurly’ (chocolate covered toffee in a curly shape, in case it’s not available in the US!)

I got to go horse-riding on Tuesday, which I love as it gives me so much freedom. It’s time out of my chair, it gets me off my estate where I live, and because the horse is so tall, I have an amazing view of the countryside. For the moment the benefit of horse-riding out-weights the horribleness of the pain I am in, and helps with aches and pains because of the movement of the horse. I have a special saddle, which means I mostly sit ram-rod straight, which is good for my posture. I also have great banter with the people who help me. So far so good, until lunchtime.

The ‘curlywurly’ moment

Tuesday was day two of the D-I-E-T. I decided after the trauma of Sunday that I needed to lose weight to help with the back pain and needed a sweet treat fairly low in calories, and that didn’t feel like a ‘diet chocolate bar. Sounds great. Unfortunately, in went the curlywurly, out came the filling, leaving me with a such a large space in my tooth that I kept hitting it with the tip of my tongue. Fortunately, I manged to get an appt to fix it temporarily within only a few days, which is a bit of a rarity in this country. Before all that, I had to get home. More of that in a previous post, as it’s part of a bit of a saga

Mind-mapping…

By this point I was shattered so had completely forgotten about a appointment. My new OT arrived to do a sort of mind-mapping thing of where my head was at this point… great timing. We decided to focus on what my ‘roles’ were… so I am a daughter, sister, friend, listener… to carers as well as friends. It was so helpful to do that. The OT words were that it helps to ‘validate’ things I do manage to do, and where I want my priorities to be. As it turned out, the things I like doing and want to spend my energy on were on the left hand side of the page, and the things I end up spending my energy on were on the right hand side of the page. Things like appointment, being a service user (of several services) and all that entails, and trying to ‘people manage’, which I have ended up doing all of as I don’t yet have a ‘Joint care manager’, after more than four months of NHS funding. My OT told me that after some investigations, my file has disappeared into the either… welcome to my world dear readers, par for the course for me, however pessimistic it sounds. If you aren’t currently working due to being ill/sick and/or disabled, I’d recommend mapping out what your various roles are because it will help to see what you do manage to do and work out what else you might manage to do or to refocus where you are spending your energy. I spent the rest of Tuesday recovering from it all!

A new hobby

On Wednesday, I tried and failed to find a recipe to cook and freeze and decided to make bread instead. This means with me mostly directing, and the carer mostly doing. Somehow I ended up with more flour on me than the carer did! According to the carer, the bread looked like ‘sick’! However, it smelled like bread as it was cooking and tasted like bread when it was out of the oven… result! Odd, that I felt I’d accomplished something new when my carer did most of the handiwork! I’m definitely making it again as it is so much nicer that shop-bought bread and easy to do.

Me, the Social Flutterby

Thursday arrived, and I had a busy day planned, but fortunately this was a Good Day. Lots of banter with the morning carer, which as I explained before makes a big difference. I had a chance to rest, followed by an appointment to update my care plan. Just after this I got a welcome surprise visit from two lovely ladies who are volunteers with the local social enterprise who teach me to horse-ride. We had a great time catching up and there were lots of laughs. They worried about tiring me out, which happens very easily, however,I had time to rest before I went to a well know eatery with the bread-making carer and a dear friend. I left the carer and went to the nearby cinema with my friend to watch the film “Brave” the new Disney/Pixar animation. Caution: skip this part if you’re planning to see the film as this next part contains spoilers. I’d heard nothing about it before I watched it, but quickly realised most of the stronger characters were female. It’s basically about a mother/daughter relationship, and about being careful what you wish for! The moral in the tale is about finding your destiny within yourself rather than from a fate (or higher being?) which I don’t agree with, but I liked film and how it had strong female role models. All the Scottish accents kept me amused thought the film, and being Scottish myself meant I picked up on more of the jokes than my friend. Or, maybe I just have an odd sense of humour. I’d highly recommend Rachael Held-Evans Review of the film, which you can read here. After all of this, it’s hardly surprising I fell asleep in my wheelchair in the early evening.

Friday morning started uneventfully, and I got ready to go and meet my friend. It was fine, until I tried to leave. It being Friday lunchtime it was difficult to get a taxi. I tried to get my manual wheelchair to my carers car, but realised the wheelchair was completely busted. I ended up deciding to put my walking frame in my carers car and wing it. It’s crazy that I had to walk and put myself at so much risk when I have an electric wheelchair, and can’t get a taxi. I had a enjoyable catch up with a dear friend over a pub lunch, but an still suffering the consequences of trying to walk, even though I only crossed the shopping centre, street, and square, and back again. My feet are red raw, I’m exhausted and in so much pain. I really have to get the transport situation sorted. The rest of the day was a bit of a struggle due to medical issues and fatigue. I just completely crashed when I got home.

Drama, Drama, Drama

I’d hoped the drama would stop today but I started the day with a broken washing machine. These things are part of running a household but I have a smaller washing machine because the kitchen units are lower than normal. Absolute pain as I wasn’t informed of this when the kitchen was designed. However, I’ve made things worse as I didn’t fill in the guarantee. Off to start sorting it out so I can party later!

Transport (or lack thereof!)

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A thorny issue…

I am well aware that the much-debated  subject of which I write is an understandably thony one, and to which there are no easy solutions. However, it is one which is having a huge impact on my quality of life. It also has a huge impact of the quality of life of many other disabled people too. I am wary that this will sound like a rant, as too many blogs on these and similar subjects can be, due to the depth of people’s feelings and the lack of any real solutions.

Right, where to begin. Transport has always been an issue for me, right from the point I left home at 17. There would be times I would stubbornly walk places, and suffer the consequences afterwards (blisters, pain, spasms. Other times I would fork out for taxis I could barely afford. I have always been someone who would would rather fork out for transport, and expend energy I didn’t necessarily have, in order not to miss out on social occasions. The impact of not doing so always seemed far worse. On the whole I am of a similar mindset nowadays, there just being many more circumstances, much reduced options and much more fear as a result.

For a while now, I have been compromising a great deal, whether that be sacrificing my pride and scrounging lifts off friends, (I HATE asking for lifts ). This means using my mannual self propell (SP) chair or my 3 wheeled walking frame. The walking frame or my zimmer is okay for short distances such as to/from cars and in and around friends houses. The thing is, I am not particularly supposed to be using it at all, though i can get away with it for what I’ve mentioned above. Ideally, I am supposed to be full time in my electric wheelchair. There-in lies the problem. Unfortunetly, this is where the problems start…

The saga begins..

I spend a great deal of my time trying to manage all these problems. A kind of damage, or circumstance limitation you if you will, due to being unwilling to sacrifice most of my social life. If I were to take my new electric wheelchair everywhere, I would immediately have to sacrifice going to friends houses. Then, I would only be able to go to places if I could get a rear-opening taxi, of which there are few. I’ve tried other taxis. There just aren’t many my electric wheelchair will fit into. My chair is very high partly due to the time of cushion I need and also to a possible error on the part of wheelchair services. I asked for this chair to be slightly lower than the previous one. However, it is the same highet as the last one, and the height of the memory foam cushion makes the highet of the chair from the top of the cushion to the ground still higher. Add that to the height of the chair as a whole plus the headrest, and you see the problem.

Then, add in that the local private higher firm only has a few rear-opening taxis, and that they seem unwilling to use them, either because the drivers dislike carrying wheelchair users (I have often heard this though obviously difficult to confirm) and also that this same company has the contract for carrying wheelchair-using children to school, meaning that these taxis are unavailable from 6am to 9.30 am, and from an unknown time (perhaps 2pm at the latest) until at least 4.30 pm, which is most of the time I need to use them. Given all of this, I need to look for alternatives.

One of the biggest firms in my city  also have some taxis where the door open outwards, but again these are in short supply. The taxis which are high enough for my chair are too narrow to be able to turn my chair round and have the chair properly clamped in. The reverse is true for the taxis which are wide enough. I know this too my cost, as my chair got stuck in one of these taxis. Fortunately, the driver was understanding and patiently working out the best way to extract my wheelchair from the taxi. He ended up removing not only the headrest, but part of the sholder support as well, as these are attached, so to do without one I have to do without the other.

So, are there any options left to consider?

The only other solution is to use the local social-enterprise company, who market themselves as being more understanding that other firms, having staff who are more highly trained and more patient, and also stock the kinds of cars which fit more types of wheelchair. I have used these a few times, mostly without incident. However, this is also not without its problems. I am unable to book a church with them unless I book it far in advance, which would mean me being more organised. Also the times at which you can book can be restricted. There are times when I have phoned to book transport to be told that the person who takes the bookings is not available and I have to call back later. Once, I was simply told that had gone home, and the person at the other end hung up the phone on me.

There was also a more recent incident. I had to the social enterprise where someone is teaching me to to horse-ride. I’d decided that morning to take my mannual chair, (which other people then have to push for me) and book are normal taxi, transfering from chair to seat, and the same in reverse,  because of how difficult it is too book an appropriate taxi for the 5 mile distance from my home to the social enterprise. A friend had booked an accessible minibus for a very similar journey to the same social enterprise, at the same times I also needed transport. When the minibus arrived to take her home I asked if I could be taken home in the same minibus. The person refused. I politely explained I was registered with the social enterprise which they work for and my friend explained that I lived on the same estate as the person he was taking home. Still, the person did not budge. I had not booked so that was that. Off they went with an almost empty minibus, and only my wheelchair using friend for company. If they had been willing to be flexible they would have had two fares for the same distance. Given that they are a social enterprise ake a company you;d have thought they’d be greatful for two fares for the same distance rather than one. Later that day, I explained the whole situation to my Occupational Therapist, who offered to call the company on my behalf and make a complaint without indentifying me. I am too afraid that were I to complain in person, I would then be blacklisted and unable to travel with the company at all. My options are limited enough as it is without restricting myself further.

The impact of all of this on my life is such that I now restrict my social life to those events where I can scrounge a lift from friends and take my walking frame with me, suffering the consequences after. For the situations where that will not suffice, I use my precious carer/PA time and ask them to take me on the bus/in a taxi with my manual wheelchair. The main consequence of this, other than the posibility of injuring the person pushing the chair, is that not having adequate support can leave me in agony, and severely fatigued for at least the rest of that day and all of the following day, limiting what I am able to do in the days following. On the times where I am unable to book support I miss out. I also miss out on using my support for things like the gym or swimming because I’ve had to use my support time for when I need to go out with my manual wheelchair.

As you can read, I feel completely out of options, as my elcetric wheelchair is also too big for the bus. I know this because I used to have discussions with my Dad about this when he headed up the day to day running of a bus garage for a multi-national organisation. He would argue that wheelchair users shouldn’t be using the bus because they weren’t a disability organisation. When wheelchair users complained the driver would not allow them on the bus Dad would go and visit them at home to discuss the reasons why.

 

So, what now?

The impact of all of this is now I have a fear of travelling where once I did not. I am also unsure if my chair would be allowed on trains. I fear not, given the problems I have with buses and taxis. I fear the same problems would transfer, so I have not ivestigated it, deciding it is too much trouble. The consequences of this is that I have missed out on the opportunity of a lifetime: to see some of the 2012 Paralympic Games. There are other issues as well as travel, such as I only have 16 hours support and week not including mornnings and evenings. I could have much more, given the extenrt of my disability, but am unwilling to do so given the impact it would have on other aspects of my life, so choose to have less support, while I still have a choice to stubbornly struggle on instead. One of my carers pointed out to me this morning, that had a sacrificed one sit a week for several weeks, I could have saved up enough support so as to be able to visit the games for a weekend. He fairly rubbed salt into the wound, saying that I would have loved to do it, and that any reasons why I am not going are just excuses. The truth is, I am too unsure how I would travel, given that I have so many problems already with relatively local jorneys, without adding my care needs on top of that. I could of course have thought about a motability car but feel this option is already closed to me. I am unable to learn to drive myself, having been assesed as not having enough co-ordination ir stable enough reaction times to do so. As I have carers rather than PA’s there is too much variation in staff for them to drive a motability van for me. A friend investigated this option for someone else and discovered then that only 3 people were able to be insured to drive the motability car. This is an impossibly low number, given that I’d have to get one of my parents and one of my keyholders insured as well.

I feel I have exhausted all options, therefore missing out on a one in a lifetime opportunity. In my mind, you can’t get any more restricted than that.As to the solution, I have no idea, and it is now to late to find out. I will have to be content with cheering myself hoarse from my sofa and being satisfied with friends’ accounts of the games. I bet no one can cheer louder than me…

the joys of being ‘cared’ for….

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To blog, or not to blog…

I have no idea whether the subject about which I am writing is often blogged about or not. It certainly has an image problem, as Lawrence Clark suggested in his recent blog for the Indy’s notebook. It is also something which concerns all of us. Someone (I can’t remember who) made a comment to me recently about paying their taxes towards it. I much prefer those jokes to news articles shouting about how much it costs (or will cost) the nation in future years. There have also been articles written about problems within the industry, such as the low wages for long, difficult hours, high staff turnover, (3 staff trained partly for my specific needs are about to vanish!) and lack of organisation. As I do not wish to get any person or organisation into trouble (or indeed myself) I shall not name anyone who is currently working ‘with’ me. I say with, because not only do the best ‘carers’ care a lot, there is also, for me a sense of being in something together, and with the very best ones, copious amounts of banter. Take this morning, for example….

Another morning, with another bugger

Carer A is someone I am incredibly fond of because I like them as a person and because of the startlingly good job they do. I shouted through if they wanted the good or bad news, and they said no news … that I should wait while they prepared themselves (for the headlines). Little things, but makes a big difference. I asked them what they would do when they leave, that they would miss me. They wouldn’t be able to tell anyone they were ‘bloody useless’, for example. His reply, that he would ‘find another bugger’. This is how the morning progressed. The difference it makes however, is huge. I am starting the morning with a smile on my face and a giggle in my throat. As opposed to concentrating on the pain or discomfort, or how hungry I am because I started a d-i-e-t today!!

Thankfully, they don’t all move on to better and brighter things…

Carer B is one who is not leaving, with whom I have similar banter, and who is likely in the coming weeks to moan about having too many hours with me because so many others have buggered off. With whom I will have coffee ‘alfresco’ and catch up on our news after her holiday. A cross between a friend and a carer. A difficult tightrope to walk (or wheel). One who I am happy to introduce to my friends and who all my friends love too. I do not think she gets paid nearly enough for the privileged. As she says, she should get paid at least double for the misfortune of working with me!

‘PA’s’ or ‘carers’?!

Another debate is one for disabled people themselves, whether to employ their own PA’s and struggle to find staff or to have a care agency come in, and all the associated pitfalls. Martyn Sibley is a prolific blogger who has written about this same subject. He chose to have PA’s as it gives him more choice and flexibility. In a ideal world, this might be the route I would prefer, but having had PA’s I’d rather at this moment in time not to have to deal with the paperwork, which makes me feel lazy. Actually though, I’d rather use my energy for other things. Which means, I only have flexibility with the better carers, and I only have banter with the best of them … before they leave. Unless they have dependent children, in which case, they need flexible hours and have no choice but to stay.

It doesn’t take a genius to realise that, (to use another cliche) the current government are shooting themselves in the foot. To truly provide for our future needs, we should invest, invest, and invest again… in more pay, better conditions (such as the abolition of ‘zero hours’ contracts) and in better training in order to attract (and keep!) the best staff for the long term. As it is however, carer A is leaving to work in a branch of a well-known pizza restaurant because it pays more money than care work. Honestly, how is that ever right, even in a recession, that pizza makers are valued more highly than care workers?! Surely this perfectly illustrates why we have some of the problems we have? The world and his uncle (or Auntie) has opinions on this subject, and so here are mine! Am off to enjoy my one day without ‘afternoon care’, a ‘sit’ or ‘respite’, whatever-the-heck-you-choose-to-call-it.

 

26th August 2012

An aside … to do with the leaving of bread(cake) on roof of car…

Carer C and I were playing a game of sorts today trying to come up with all the things she would and wouldn’t miss about our job. She reminded me of one of her highlights! How could I have forgotten that last week, we made bread and the next day I asked her to take however much she wanted with her. That day, as she was leaving, she put the bread on the car roof before she got in the car… only for some local teenagers to stop her and yell about the ‘cake’ on the car roof. She said the look on their faces is one she’ll never forget. This story is one I’ll never forget. I have as much banter with Carer C as I do the others… and I will miss her much *sob*