Category: This was the week that…

An exciting collaboration

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Not one, but two!

It may sound greedy, but if my life-story were to be written by someone other that me, I can’t think of just one person who could cope with the faith stuff and the disability stuff. Apart from Joni Earekson Tada, I guess. Or at least, she’s the person most well known to me who could handle both aspects expertly. The thought only just occurred to me.

The first person I thought of yesterday though, oddly, was Jacqueline Wilson, one of the queens of children’s books here in the UK, For a good few years now, she has been writing stories about how children handle crisis or difficult starts in life, and some have been made into TV movies including ‘best friends’ and ‘dustbin baby’. The lovely thing about these movies is that in general they appeal to the whole family, regardless of age. All of this makes her the perfect person to write a children’s version of my autobiography, for both disabled and non disabled children, and I think she would bring a humour and lightheartedness to the difficult or squeamish parts of the actual autobiography. Who would make a good collaborator for the faith side though? Maybe someone like Francine Rivers, as some of her stories are fictional representations of biblical stories, but the faith side is still strong, true and shines from the page. Sorted 🙂 

 

Daily Post : If you could have any author –living or dead – write your biography, who would you choose? http://dailypost.wordpress.com/2013/03/11/daily-prompt-ghostwriter/

last week, musically speaking

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This morning contained a fair bit of music, between the radio breakfast show I listened to, the band practice I heard before church, and the various worship songs I attempted  to sing along with. My afternoon only contained a little bit of music,  by comparison. This evening, here’s my personal response to today’s daily prompt. All of these videos, except the 5th one, applied to each day last week in different doses. On Friday there was relief, the day on which the final video applies. I felt, through the week, as though I were searching, and that day, peace finally came, or rather, I allowed myself to be at peace. Rather than giving my burdens up and snatching them back again, that is!
 

Here’s to a new week! 🙂

Welfare State: The terrified get more terrified as PIP looms large

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This post is in response to last night’s Dispatches programme on Channel 4. However, you should be able to follow this post even if you haven’ t seen it. It is also in response to the ‘daily post’ as it is the antithesis of my ‘happy ever after’. Read on to find out what my happy ever after actually is!

Disability Living Allowance (DLA) currently costs the UK economy 12 biliion and is paid to 2 million adults. The government wants to save two billion pounds by taking half a million people off the benefit. ‘Dave’ says anyone who has had to fill in the forms knows they need changing. He’s only half right. Anyone with a dependant adult who can do nothing or almost nothing for themselves is relieved that they can simply tick a few boxes, instead of revisiting the hell of the current form making them list everything the person could not do and why, causing emotional harm to the person who fills in the form. For anyone else whose severity of disability falls in between two check boxes or fears they are unlikely to qualify, their fears are overwhelming and varied. It is all of this which has given rise to the documentary.

Esther McVey, the current Minster for Disabled people, says DLA did not take account people whose disabilites weren’t physical. However, I have read a blog by a blind person who gets money towards aids and mobility now who fears they will get nothing from PIP,  read a news article about a woman with profound and multiple learning difficulties who was assessed as fit for work, and read a carers opinion that while the understanding of mental health problems was limited on the DLA form, on the current work capability assessment forms it is even worse. Who is to say the PIP form will be any different? Also a major difference between the two benefits is that DLA focused on ‘self-care’ where appropriate wheras PIP focuses largely on people being ‘cared for’ therefore ruling out hundreds of people. I guess this is the governments aim, but it puts understanding of how disability affects people back by 20 or 30 years. Esther Mcvey the minister for disabled people argues we need a benefit which is “fair, clear and sustainable”. Few would argue with that. However, the Goverments arbritary restrictions on how far a person can walk being the condition for the mobility part of the benefit causes problems for thousands of people who can walk it but it would take them a long time, cause them to be excessively tired, or be in excruiating pain, or a combination of all three for some, including me. Add in the thorny issue of public transport which also affects thousands and you have problems galore, as adepitan explained in the documentary.

Paralympians explain it got them to the paralympics but also they have the same difficulties as other disabiled people. They are neither superhuman nor more able, argues Natasha Baker. Likewise Sophie Christiansen worries she will lose her car, and asks “what does 200 metres tell anyone?”

The DWP’s statement says that the 200 metres has to be completed in a timely, safe, and reliable way. In my opinion this may well be the saving grace for many like Christansen and Baker. However, this caveat was only re-introduced thanks to a successful campaign by disability activists after the government tried to remove it.

Re-assessment is another issue. People were previosly on benefit for life if their condiction wouldn’t improve but now will be tested regularly.  Lawrence clarke argues that he is asking for the support he needs to take control of his life and how is reassessing him saving money.

Esther Mcvey says 50 percent of people don’t have medical evidence to back their claim, however if goverment wanted evidence they’ed only have to ask to see the form I submitted when applying for income benefit or ask to see my MASSIVE medical notes.

However, is this type of documentary helpful in raising awareness of the issues both to disabled people themselves, and the general public, or is it simply scaremongering, ramping up people’s anxiety unnecessarily before they’ve even seen the final form?

There are more concrete worries as well because the company being paid almost £400 m to assess people has a “controversial track record”. I have to say, that is some understatement.  ATOS are the French IT company who asses people’s eligibility for income replacement benefit called Employment and Support Allowance if someone is unable to work. However, ‘widespread protests’ by disabled people and a cost of appeals against desicions of  £50M a year; 40 percent appeal and 40 of those desicions are overturned. None of this is likely to fill disabled people with confidence. Even the ‘Public Accounts Commitee’ have roundly criticised both ATOS and the DWP.  ATOS however deny everything and say less than half a percent of appeals are now due to mistakes in their reports. Esther McVey disagrees too saying ATOS keep within the government’s “strict rules” and disabled people are entitled to give their opinions on the process of assessment. Sorry… but is the disability minister even listening?

There are further questions over whether ATOS are fully prepared and qualified to carry out the new assessments. Many, apparently, will be undertaken by physios. Sorry,  but a physio does not have the medical training to understand the problems my surgery caused and continues to cause, or the way one thing impacts on another.

A former marine casts doubt over the thoroughness of the assessment process and says the nurse was shocked at the sight of his prosthetic. It doesn’t bode well! He did however win his appeal.

Barroness Tanni Grey-Tompson says changing DLA itself was preferable, but the goverment wanted sonething that didn’t sound so big and expensive! People are either superheroes or scroungers, regardless of fraud figures, she says. I have to say I agree with her! By enlarge, the government have the mainstream media on their side in helping to perpetuate these myths in my opinion. Barroness Grey-Thompson says she “doesn’t want to see disabled people ghettoised and locked away” as all progress made by disabled people will be lost.

“DLA has allowed disabled people to live independently in a society that’s not really built for them” says Adepitan. For me this is the crux of the issue, and in my opinion something you only fully understand once you are in that situation yourself. Only time will tell if some of the worst fears are realised.

Today’s daily prompt asked me if I am living my “happy ever after” and if not, what would need to change for this to happen. In an ideal world I’d be married to mr right,  be able to cope with a least one bairn and potentially be working! oh and be living in a supportive, understanding society!!

Realistically, I’d settle for the cuts being more widely spread, and for the current reforms of both DLA and the NHS to be revoked. Instead, DLA would be reformed from within with a different, capable contractor at the helm. As for the NHS, current attempts to privatise it would cease and money would be saved by the implementation of effective, preventitive measures,  and more front line staff would be employed not less, all saving the government pots of money in the long-run. The end.

Great Songs no fillers!

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Today’s daily prompt: Write about what you did last weekend as though you’re a music critic reviewing a new album.
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This was one of those that only come along once in a while. So good you replay it over and over, every detail, every nuance. The First have was The One with The Wedding. Great music for a party, the sort of music everyone loves and can join in with. That everyone loves, with few exceptions. So good you want to dance. It makes your body move and your spirit sore, and wish you could write music like that. But hey, let’s leave it to the experts, the ones who meet The One, and can show it as such, appreciate it and grow it, and protect it, and mature it for years. This is their gift, just as others have the gift of making music. Some of the songs on this album are traditional, but the music does not suffer, rather it is all the richer for it. This album could be the sound track to the kind of party that goes long on long into the night, but it is so good nobody cares.

Part two. Another day, a plan for another party

The second half of the album sparkled, full of excitement and promise. The final couple of tracks sang of a future full of love, fun and good times. They are as much a part of a good party as great food and good wine. This is one that will stick in the memory for a long time to come, a success that will not be easily repeated.

Not your average room

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Today’s daily post subject is welcome relief from the morbid fascination of late. These deep thinking posts are good to do once in a while just not all the time. Write your eulogy, epitaph, 5 things you would save if your house was burning, go back the next day and look for what you left… ugh!
It’s a welcome relief to think on something I ponder on in a while, if money was no object. Would have to have a calming colour on the walls, even a light yellow, if there would be any wall space left once the floor to ceiling bookshelves were finished. I’d definitely go for the best quality wood I could afford due to the cost, and for durability.

I’m trying to think how to make them accessible. I remember seeing something on Extreme Makeover: Home Edition once. This was a shelving unit too, but this one rotated at the touch of a button so that the button was held down until the required item was in reach, that would be amazing. I’m all for a quality product made in an accessible way, that appeals to everyone. This is also known as something called “Universal Design”. All it is, is a design everyone would want to use. My college tutor was fond of using the example of a part of the University where there were some steps side-by-side with a ramp. According to him, almost everyone used the ramp, rending the steps pointless and meaning the ramp could have been twice as wide, allowing more people to pass more comfortably.

The practical design would continue, with an adjustable height desk, and quality drawer space. I’d love the new windows 8 tablet that converts to a laptop, almost £1000k, without the accompanying keyboard! I’d have a proper keyboard, and as much software as I needed. As this is my dream set-up, the software would be compatible with windows 8 from the beginning of the process, instead of being a few months/ a year behind (at least) as is common. I’d save some money by not needing an office chair, obviously.

I’d use this money for either an electronically adjustable recliner armchair or a chaise-long, to be able to read comfortably, with soft overhead lighting. I’d absolutely have to have the best coffee maker and china mugs, and a popcorn machine. I would have plain popcorn, the kind a student I once knew used to live on when they were studying. It was delicious and much healthier than the salt, sugar or something in-between flavours.

What have I missed? Oh yes, the view. Given I haven’t seen the sea for such a long time, I’d love a sea view. I wouldn’t much mind which sea it was, though I’ve only ever lived near the north sea.

I wonder if I’ve missed anything?

What would any of you have in your ideal reading and writing room, if money were no object? I’d love to know 🙂

Two stories, one theme: The Welfare State

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English: A typical credit card terminal that i...
English: A typical credit card terminal that is still popular today. visanet (Photo credit: Wikipedia)

The title says it all. A somewhat un-sexy subject, but one very much in the news at the moment, and in the days to come. This week, two stories really affected me for two reasons, first, interest the arguments involved, and secondly, because both may have a direct impact on me in the future.

The first: Welfare ‘credit-cards’

This is one that sounds simple. A good idea in theory to some; much loathed and feared by others. This week in the Guardian I read an argument for and one against against the introduction of benefit payments by ‘credit-card’. In conjunction with universal credit, these cards would contain all of a person’s benefit payments on my card, in my case at the moment, Employment and Support allowance (ESA) and Disability Living Allowance (DLA). Every-time I bought something, it would show up on the card. What about places that don’t take cards?

Another concern for me, is that as each transaction could be itemized as on a bank statement, there is the potential that someone could see all of my transactions, and potentially make decisions on whether purchases were necessary or not, and if that was someone with the authority to do so, potentially limit my spending. This is a fear expressed by both Ally Fogg in his article for the Guardian this week, and by Tentacle Sixteen in his blog post.  Items such as Sky TV are  as luxuries to many, for the likes of myself, these things are a lifeline I can ill afford to lose. I spend much of my time indoors, and so spend a long time using wireless internet making purchases I would be unable to do in person for all sorts of reasons including, lack of energy, not enough care time to have someone with me, an inaccessible shop (Hobbycraft for one…). There is the updating of this blog, and so on, including social media. Not to mention the articles I write, between other things, which give me a purpose, and something meaningful to talk about when friends or others ask me what I fill my time with. Again, this to me is a lifeline. I very much rely on my friends. I have basic television and broadband subscription  but spend more on telephone and mobile (I’m sure you’ll understand why, if you’re a regular reader…!)

Also, what about larger purchases? This laptop is dying, as is my ‘spare’ wheelchair. Both are very much necessities  It is already hard to save up for these things, as savings are penalized if above a certain level. When DLA is replaced by PIP of course it may become impossible to make those savings in the first place. Who’s to say what is and is not necessities  If the washing machine, a smaller model to fit under lower work-tops and three times the price (at least) of an ordinary machine, bye-bye new laptop and essential assistive software.

Next we come to a thorny issue, which I have already touched on: privacy. Will all the purchases be visible by another person, and what if the card is lost or stolen and accessed by another. What about the risk of fraud too, if only a pin number is necessary. It will, according to some, also identify benefit claimants as such, many already under pressure from increased discrimination as it is. Claudia Wood, also writing for the Guardian this week, takes a different view and argues cards would cut, not increase this stigma.

For a fuller discussion of the issues at stake, visit Tentacle Sixteen’s blog post, and or the Guardian articles from this week, which I have linked to, above.

Story Two: The ‘Bedroom Tax’

ITV news last night (Fri 1st Feb) featured this issue and spoke to a number of claimants as they expressed their fears better than I can. It refers to Housing Benefit claimants considered to have at least one more bedroom than they need. Money is deducted from their benefits as a result, about £14-18 a week or £600 a year.Some of the people being hit really are most vulnerable  and ought to be protected, such as Claire. She has severe cerebral palsy, requires round the clock care, and has constant spasms, requiring her partner to sleep in the room next door, enabling him to be fresh enough to care for her the next day.

However, as Claire says, they will be forced to share a bedroom again. This has increased her partner’s migraines, rendering him unable to care for her, and them having to pay out for more care, relief carers for Claire which the couple can ill afford. Given the government’s attitude on similar issues, I find it difficult to believe they would realise the enormity and impact of such a situation. The government reply to this, was it’s tough, but tough decisions have to be made, and people should just get on with it. Sounds a valid argument, but yet more pressure heaped on the heads of people all read pressed in on every side. Remember the ‘compassionate conservatism’ mentioned by ‘Dave’ at the Conservative Party Conference in 2012??!

This is not a situation that now affects me, however, were I to need live in care in the future, on an ad-hoc basis, or be married and have a partner/carer unable to sleep because he’s being hit and kicked, or affected by problems with my bag, it doesn’t bear thinking about! My heart goes out to Claire and her partner. I just hope this Government sees sense before it is too late.

hanging on for dear life…

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Image

This is what I see

I wanted to write a short story based on this picture, but I lacked the courage! I noticed the couple first, then the graffiti, then wondered what the buildings were further down the street, are they shops? They certainly look inviting, whatever they are. Then I looked at the couple again, but then I looked away, as in embarrassment,  as though I was staring at something private. To me they look like they are clinging on for dear life, time has stopped, all they are aware of is each other.

Gate-crashing a private moment

I haven’t ever felt like this… not as fully anyway. Somewhere near it recently, though not the real deal, as the feelings have faded. I cannot get the picture of the couple out of my head. It was some time before I noticed the ground they were on was actually steps. They almost look pretty. I briefly wondered how long it would take me to descend them, if I passed the couple. I can’t shake the feeling of looking in on a private moment. It’s almost a PDA (Public display of affection. I HATE PDA’s, for the record.) Everyone else in the picture looks as though they are going about their business, tourists on the other side, deciding where to go, what do first. Still I cannot forget about the couple.

The picture makes me…

Looking at them makes me feel wistful. A bit wistful that I wish I had what they have, but mostly because more than one friend I considered myself close to has recently found The One and with the exception of one, haven’t seen the other for ages. They were, are, friends I relied on partly because they’re ace and I loved them to bits, partly because they were sympathetic to my semi-housebound state and would visit gladly, and often.I’m having to readjust my feelings, make other friends, find other ways of coping. Does that mean I relied on them too much? This doesn’t necessarily mean I am lonely, it just means I miss them, LOADS. When I wrote about my friends last year, two of them were most definitely in that group. Don’t get me wrong, I am happy for them, I absolutely am. Which I why i am leaving them all alone for the most part, to get on with it, and missing them from a distance. Sometimes, I leave a voice-mail, and sometimes I suggest meeting. Mostly, it doesn’t help with missing them, but hoping this feeling will fade. Of course, I’m also hoping it’s my turn one day, as I wrote in an earlier post. For now, I will let the people in this picture get on with their day, and I will go back to mine, leaving the couple in the picture to enjoy their embrace in peace.

p.s. It also makes me want a holiday somewhere in Western Europe. Definitely time to go back to my day!

This post is in answer to the ‘Weekly Writing Challenge’. If this picture inspires you, why not write your own post, I’d love to read it!

Fire!

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Image

Today’s daily prompt is as follows:

Your home is on fire. Grab five items (assume all people and animals are safe). What did you grab? 

This is a poignant one for me because a friend had to move out of they’re house a few months ago due to a fire in the downstairs part of the house. That and the fire station at the top of the estate is closing down. Oh, And I once set the grill on fire as I couldn’t retieve the toast quick enough! I managed to put that out myself, fortunately.

As soon as I started to think about what I would grab my emotions started fighting with my emerging practical side! I decided… wheelchair charger (for obvoius reasons,) handbag (is this cheating?! Either the fleece blanket from the end of the bed or my dressing gown, as either is equally comforting and both were presents from this christmas or last. Two left… bible, rather than kindle, and one more… phone charger probably!

No sentimental items for me, as I don’t take a lot of photos, and so don’t have much on the walls, some pictures and a calendar  none particularly sentimental, and no photo albums. I’d have to leave tatty behind, though he could fit in my pocket. ‘Tatty’ is a small teddy bear from a carer, who is amazing, and lovely and beautiful and has now left to go travelling. Oh dear, the list is growing, think I’ve missed the point of the prompt, somehow. Okay, over to you, what 5 items would you grab and why?

coffee, naps, and blog posts…

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Forgotten everything I’ve learned…

Today’s daily prompt really made me think, as I couldn’t remember at first the last time I learned something new. I thought back to my last period of formal study, for counselling skills qualifications, and  that was two years ago possibly, I can’t actually remember, and then I counted up the years since I began my Masters degree, and realised with some shock September will be seven years! I tried to think then. of more recent times, and couldn’t think of any new hobbies. Then the answer hit me full in the face.

Just a beginner…

I’m having to apply myself to learning how to  write. For a start, I’ve never considered myself a writer. This may seem odd, as I have the equivalent of an A in English at GCSE equivalent  and an A at A level (AS2?). Not only that, but I have a 2:1 in English Studies at degree level too. The one piece of creative writing I remember doing, I did all right. I wrote about what I knew, and managed to get s B-. I was pretty chuffed then!

Drawing Pins…

I also once wrote a poem about drawing pins for a creative writing group I was part of for a while. Let me explain. While I was at my (on-campus) university, I used a mobility scooter to get from place to place. They’re basically glorified electric wheelchairs and their use has become more controversial depending on your view. They are considered a nuisance by many people, especially if used on the pavement or holding up traffic.

When I bought the scooter, a flatmate had just broken her leg and her scooter crushed her leg. That was down to a fairly cost effective lightweight model. The scooter I chose was a much heavier less sexy more expensive model. Having borrowed another flatmate’s scooter I decided against ‘puncture proof’ solid tires. In those days, the English Studies Department used notice boards and drawing pins, meaning I often had to phone security or a friend for help with fixing the puncture. I once wrote a poem about my plight, and the ‘teeth’ of the pins, which a few in the English Studies Department remembered fondly even a few years later. I later discovered my poem was the department’s reason for the swanky, glass covered notice boards which enclosed the pins, preventing their escape– Result!!

A head start…

These being my only forays into creative writing, I took some persuading when a good friend asked me to write for her friend’s website. However, my friend persevered, and eventually persuaded me. I was delighted recently when my very first post for The Big Bible Project was among the Top Ten most shared posts last year!

I am aware I have much to learn, not only in learning how to write, but also, in learning how to study again, and build a following within the constraints of my crazy body and limited energy. Perhaps this is my priority, to learn to ‘work’ and study within my limitations, This is partly why one of my resolutions this year was focused on a post a day, to try to coax myself into cultivating good habits, and learning though practice, as Jeff Goins recommends in his book You are a Writer, so Start Acting Like One. 

I’m off to apply myself to reading proverbs 31 for next Bible Study for Bible Reflections. Watch this space…

‘seeing red’!

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Yesterday’s daily post question is easily answered, although it will not make comfortable reading, for me at least! Many people think I cope with all I have to deal with pretty well, which I would agree with, to an extent, but part of it is because some of this is what I have always known However, I don’t like the way I don’t cope under pressure…

Well, if it’s other people’s pressure and they turn up at my  door, it’s fine. I’m good at helping them calm down, listening to their problem(s) making the tea, and praying with them as requested. I’ve had plenty of practice at this which is how I know. Put me in the same situation, however, and it’s entirely different…

Medical related crisis are a different matter. This time last year, it was nearing the end of the shift for my carer, but the stoma bag had ‘popped’ when we cleaned the stoma it bled much more than usual. Seeing as the agency have a ‘duty of care’ towards me, they would have been judged to be neglecting me had the carer not phoned the care co-ordinator for advice and then an ambulance  In that situation, I was the one calming the carer down, not the other way round. It was the same when I tipped my little wheelchair backwards and whacked my head of the pavement.I was very calm at the scene, got myself home and started ringing round friends to cadge a lift to A and E. When the doctor read the riot act, at me having chosen to go out on my own, and what could have happened. still I was calm.

Yesterday was a different story. If I could panic, I did. That means biting off others heads if they try to help with whatever I am in a state over. I’m not proud of that, at all! Anyway, between us we eventually found a solution. You’d think I’d learn!! Just as the same carer was five minutes away from finishing the shift,I realised I’d forgotten to ask anyone to hand my prescription in to the doctors, so I started to panic as there was a long list of medication I should have ordered. Cue massive panic. I phoned my friend who faithfully fills the tablet box every week, and she couldn’t remember if any of the tablets were urgent. This meant going through them, one by one and I have something like 15 different tablets. Cue more panicking. By that stage, I’m so in my own head it’s’ hard to calm down. It turned out I was only short of one medication  and I have enough of it till later on in the week, panic over. I calmed down and apologised.

There’s a couple of reasons for me being in such a flap – the first being that if I do not have a ‘quiet time’ bible study, which I hadn’t yesterday, it’s much harder to stay calm, for I am relying on my own resources, more than I should be. Also the consequences of so much medication is that they fight each other, meaning I can have migraines and the like, but also crippling tiredness, I’m often up in the night wit discomfort or pain disturbing my sleep even more. Like my Mum says, it isn’t an excuse for losing my temper or not coping. but it is phenomenally harder, especially recently. I have at least 4 medications which ramp up tiredness. Sometimes I can keep going, and other times I keep going when I should sleep!

How would I like to cope? Calmly and maturely obviously,  able to take a step back and evaluate problems or crisis’ calmly, and work out what to do or say, while still being kind to those around me. Sounds simple, doesn’t it!!