Why are disabled people fighting the cuts?

Jane explains what’s at stake much better than I can. I started allowing care to be put in too lste to apply to the ILF but perhaps I would have agreed more readily had I been given a taste of the kind of independence people with ILF have had. To hsve had it, and no for it to be snatched away is Indeed cruel. Independence is expensive so no one wants to vouch for it, all they see is pound signs. Many will be reduced to the kind of kife I often have. Bored because energy or support or money is not there to di what they want to do. Please pray about ilf if you pray, and fight with us before it’s too late.

As if it were yesterday

friends

Forget it? no chance…

This daily prompt caused me to do  some soul-searching before I found it, hidden in the murky depths. Long forgotten save for when it occasionally resurfaces, stinging my conscience, the regret welling up from within, Horrible consequences which stem from the one horrendous act. I’ve just counted up how many years it is since it happened – 18 long years. oh how I wish never happened.

I had a few best friends at primary school, one who died when we were 12, between primary school and beginning at the local comprehensive. Most of my friends were, obviously never the same after that. However, the incident of my making was the year before.  A sweet girl had made me a best friend card. I half remember it now.

Which path to take?

I was in the corridor at lunchtime, the area on the right hand side where the benches were, along with two boys. I don’t remember why. What I do remember is the taunts, telling me it wouldn’t matter if I wrote something nasty. I don’t know why I didn’t just refuse and walk away, be the better person. The toss of a coin, or the fork in the road, which path to take, left or right. Anyway, I veered right. I don’t remember how the girl saw the card, if I was so callous as to hand it to her. I don’t remember the rest of the afternoon either, except a friend of the girl running after me, threatening to thump me. Nothing less than I deserved.

Repercussions…

Next thing I remember is how I sobbed and sobbed and sobbed. I think I told my mum I’d done something terrible and I hated it, the tears welling. My mum isn’t huggy particularly, but I remember she just held me while I cried. I remember my mum taking me round to the girls house. I was desperate to apologise, to make everything okay, or at least as okay as it could get. The girls response the next day, that she couldn’t forgive just like that.

I don’t remember us ever really talking after that. I remember her in the comprehensive though. I caused trouble for her then, stirred the pot. I heard her slating my old headteacher who had been very good to me. Instead of deciding it was nothing to do with me and leaving well alone, I went to another girl who shared the same religion as my old headteacher, and told her what I heard so she rounded on the girl. The first girl approached me in the playground, her eyes flashing with anger, telling me she wasn’t talking about our mutual friend but the old headteacher. and running off again. Why oh why, what is it about teenage girls, most of us have to gossip about this one and that one, separate in to cliquees to keep out one and not the other, and more besides. I remember my current bestie being by my side, who stuck by me even that day, and is still my bestie now, though many years have passed and we are many miles apart, and I have moved several times since then.

What now?

I still wonder about the girl I originally hurt. Where is she now? What is she doing with her life, is she happy, does she have children, a partner. Hoping and praying she is happy. The worst thing of all was the way I brought my Saviour into disrepute, No way for a Christian to act. I have done many hundreds, perhaps thousands of bad things since, thought this one of which I have written is the biggest regret of my life. Had we staying best friends, there’s every possibility I may have led her to Jesus, transforming her life and her confidence levels for once, and pointing her to the loving Saviour, to the love she was seeking. But all of that is history. I will never know. until one day, I will search for her in heaven, hoping someone else was a far better witness of Christ than I. Until then, I feel haunted by the mistake. Forgiven by Jesus but I cannot forget. I don’t think I ever will.

For the record, this, and one or two other incidents made me always decide to be a better friend than I was that day. I have tried, as far as possible, to use it for good. I guess that’s as much as I can do. The damage is done. Erase it? Yes please!

 

Proverbs 31: Inspiring Standard or Incredible Poem

Proverbs 31: Inspiring Standard or Incredible Poem From the series, ‘Significant Biblical Women’, here’s my latest bible study for Bible Reflections about Proverbs 31, mainly concentrating on verses 10-31. I wanted to debunk some of the myths surrounding ‘her’ story. I’d love to know what you think. If you haven’t already, check out the previous Bible […]

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An exciting collaboration

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

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! 🙂

With every breath…

Today’s daily prompt:

Who’s the most important person in your life — and how would your day-to-day existence be different without them?

I am wary of repeating what I have already written on this subject, as I have already written recently both about having no significant other (yet!) and how important my Gran is to me. Then, of course, there are the/my carers. Without them, there are some days I would see no one, and other days I would struggle to get out of bed. The other people I don’t think I have mentioned are my parents. There are other posts where I may not have mentioned them, but without them, I would not have achieved what I have. Their sacrificial, unconditional love would be the envy of many.

Were I to lose either or both I would miss them with every breath. I need them in a different way that other people need their parents. In some ways I still feel quite dependent on them, being single and disabled. This also means I do not feel as grown up as I might, with a significant birthday approaching. What I do manage, at the moment, is to live independently thus far. Time, my health and the actions of local and national government may yet change things. I don’t wish to talk to much more about my parents as I do not wish to embarrass them. However, they have done much for me and continue to do so. This includes te way both of them live out their faith and the example they are to me. As I’ve said, were I to lose either of them, I would miss them with every breath, every moment of every day.

One of life’s dreamers…

Today’s daily prompt:

The Tooth Fairy (or Easter Bunny, or Santa Claus . . .): a fun and harmless fiction, or a pointless justification for lying to children?

The tooth fairy is well remembered from my childhood, as is Santa Claus! I was eight when I asked whether he was real or not!! I still remember the conversation . As for the Easter Bunny, who needs it when Jesus is bigger than all of that?! Most of these things are a harmless part of childhood I guess, providing they’re not taken too seriously. I may no longer believe in these things but I am definitely one of life’s dreamers. It’s one of the reasons I love reading. I think if I ever had children I wouldn’t want to start these myths with them though. For me there are too many better stories, Over to you, what do you think?

 

No plurals allowed…

Today I’ve been a clutz. Already had electrician here, fixed the light in the bathroom, and one other thing. Maybe an hour later I was back on the phone needing a repair to a drawer in the kitchen! ! I had nothing to do with it; it was my wheelchair which got too near and pulled the drawer from the hinge… not pretty! I became very tired after I tried to fix it. I began to laugh uncontrollably. Carer thought I was crazy but I laughed even more. All that laughing made me hungry. 
Kitchen Round two:

I fixed coffee and food but I didn’t have to phone to report anything again… brilliant! 

Your turn to try the daily prompt… bet you can do better!!

Lost in the fog!

My first thought this morning was about how much I desperately needed to go back to sleep. I wasn’t just a little bit tired either, I was bone-tired. My head sore and foggy, my eyes exhausted and refusing to work with me; every muscle tense. My mind wanders of it’s own  accord, worrying already. Dreading what the morning might bring. I’d just realised what day it was – Thursday,  so no regular carer.  Next thing I heard was a shrill  ‘buzzzzzz’. Slowly, clumsily I snatched at the reciever, mumbling ‘ hello’ as brightly as I could. An unfamiliar accent repeated my greeting. My head searched for a name to match. Eventually, the person appeared after shedding their outdoor things, and I relaxed a little when I saw who it was.

Things got off to a bumbling start. I continued to struggle to wake; blinking my eyes furiously, doing my best t issue instructions as to what was where and what needed doing. An hour and a half later, I was clean, and dressed, necessary medical things over for now too. I remember not feeling any let up in the exhaustion. If anything, it was worse. Double strength coffee,  white toast snd chocolate spread. I was interrupted mid-way through by another person; another medical procedure. My breakfast finished eventually, I was too exhausted to hear my phone beep. Eventually, woken by a call and the promise of a visit from two dear friends, I remember feeling heaps better after their visit. The rest of my morning passed insignificantly by. daytime telly with a story about a young lad with a rare condition, his constant companion a massive, but cute canine.

Eventually, the afternoon appeared, bringing with it a trip out in the sunshine with carer B. Yummy food, a walk, a nap. Only two hours left now. My head finally clearer, I’m off to work on something else, providing I don’t fall asleep first…

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

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.