Tag: disability

The one with the wedding (2)

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the picture shows two intertwined gold wedding bands
the picture shows two intertwined gold 
wedding bands
http://www.sxc.hu/photo/1326034

A year on from the last wedding I attended, this past weekend, I went to another. This time, not of family, but of dear friends. I once looked into carers accompanying me to these things, but between their costs, my costs, and agency fees, it’s far too expensive. My Mum kindly steps in to assist me, and to do the driving, the easiest way of travelling, with all the stuff I need, even for one night. Arrangement was, I would pack my own bag the day before, so it was ready for Mum to put in the car. In my wisdom, I didn’t write a list of what I might need. I need so much, even for one night, the thought of writing a list was exhausting in itself, so I decided to ‘wing it’. This was largely successful, except I did leave one thing at home – my box of medications fondly known as ‘the UFO’. I was 30 minutes into the car journey before I realised this, meaning that we would be late for the wedding if we went back to collect it. I chose to soldier on.

My friends’ wedding was wonderful. The Church of England ‘civil’ part of the ceremony was conducted by a friendly, jovial vicar, who seemed genuinely fond of my friend. This wedding was different. The friend I now know better is a Christian, but my other friend, the one I knew originally, is a Messianic Jew. This meant that there was a wonderful mix of official ceremony, favourite hymns, combined with Jewish elements including a huppah, a canopy under which the ceremony was conducted; a glass being smashed underfoot by the groom, a chorus with a jewish tune, (sorry for the generalisation, unsure how else to describe it). At the end, the Aaronic Blessing (in Numbers 6) was read in both Hebrew and English. I’ve been to many weddings, and this one really stood out. Not just because of the elements recorded above, but also because this was a wedding which focused on their Saviour too; from hymn and reading choices, to the post ceremony message or sermon.

The teatime reception was fantastic too. Mum and I were seated next to a wonderful couple with whom we could easily converse, as we quickly discovered we had things in common, and both people were full of mischief and stories. The meal was one of Yorkshire portions – double helpings of meat, massive Yorkshire puddings, (made of batter, for anyone unfamiliar of them) at least three vegetables done different ways, and two lots of potatoes. The speeches were interesting and witty, at times sick-makingly romantic (from the groom, obviously) who had written parts of his speech in Hebrew (with translations into English) for his bride.

The evening disco had a great mix of songs, (great at the time, but now none of them spring to mind!!) Other friends arrived at the beginning of the evening too, which was lovely, though by this time it had already been a long day, and a massive effort to last that long. We left about 10 pm, which meant I was asleep from 11 pm. I was so exhausted I slept for 5 and a half hours continuously before my body woke me – my back having seized completely (which it does at home for less sleep) meaning without my electronically controlled hospital bed I needed a lot of help simply to sit up, shuffle to the edge of the bed, stand up, and get to the bathroom. Normally I would use the remote controls on the bed to sit, then effort-fully and painfully swing my legs and shuffle, transferring to my electric wheelchair which I use to get to the bathroom. It was during some of this that I prayed God would help me cope with the remainder of the weekend without medication, and with chronic pain, plus the emotional toll of being without ‘special someone’.   A picture came to mind, of sitting in Abba’s lap, with his strong arms continuing to hold me tight. I kept this in mind all night.

(N.B. Scroll to almost the bottom of the webpage for a clickable link to page 2 of the post)

Mirror, Mirror (2)

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Mirror, or vintage iPad (thanks obni)
Mirror (Photo credit: christing-O-)

A comment left underneath the post I wrote about Standing Out Sitting Down said how insightful the post was, which has given me some confidence to attempt this prompt from the 14th August:

Think of your blog as a mirror: what does it reveal? Consider your blog name, theme choice, design, bio, posts… what does every element tell you about yourself?

The title, ‘sat n all that’ was actually thought of by someone else. One of the carers, actually who I don’t see now but they used to have loads of shifts with me. The blog started as a project to take my mind off things round the time I was struggling to adjust to changes in my circumstances, and to give me another purpose to my day. I find it a little easier to think of titles now, but found it impossible in the beginning. The title started off as ‘I may be sat, but I’m all that’, but I felt it wasn’t snappy enough, and wanted to write about more than just being sat in a chair, or only about disability issues. After all, my life is more than these things. My life is not nearly as varied as I would like; ‘special someone’ is no longer on the scene, I am unable to work, and I’ve even had to cut down on the blogging, to keep up with it. However, I have amazing friends, a great church family, and have more interests now, so do still have variety of people of things important to me to write about.

The design started as something else, though I can’t think what it was now. When choosing a theme, I wasn’t really bothered about the aesthetics. I wanted something clear and easy to read, so as wide a range of people could get access to it as possible. As ‘barrier-free’ as it could be without designing a site myself from scratch, as a few friends use screen reading software, and I wanted anyone who read it to be able to get access to it on whatever device they use to  surf the web. That says a lot about me, really. I’m an open, friendly person, and I find a lot of purpose in reaching out to others, in whatever small way. Plus, a lot of disability access is  an afterthought, and not from the outset, and I wanted to think about it from the beginning.

The theme is trickier. I like the idea of being a ‘niche’ blogger, and I guess I am in some ways as I write about disability, or faith, or more often, disability AND faith, together. Both are integral to my life, and intertwined in many ways. My faith in Jesus is central to helping me cope with my challenges, and my challenges deepen my faith. I didn’t want to write narrowly on just one theme, as I lacked the confidence to think I could come up with posts easily enough on just one theme… plus, as I say, I couldn’t really separate the two, so I am much happier with a ‘hybrid’ blog. I think, now the blog is a year old, and though there have been stretches of about a month at a time where I have written little, I am more comfortable with the themes I write about these days.

If you look at the ‘tag cloud’ to the right of a post, the topics I write about most are in bigger letter than subjects I write about less often. At this time, the topic in the largest lettering of all is ‘disability’. I am not entirely comfortable with that, as there are so many bloggers out there with a disability, people who have campaigned for years, advocated for others, been active in politics, and really know their stuff. I feel so intimidated by that because I worry so much that their writing on disability issues is so much more informed than mine, and what right have I to write about it so often when any of them can do a better job?

This is partly a complete lack of confidence, and a desire that if I bother to write at all I want to write informed, quality content; otherwise, what is the point? I guess it is partly about perspective too. It sounds idiotic to point this out, but obviously no two people who live with a disability will have the same views even, on their disability, so it stands to reason both will be able to offer different perspectives. I find it absolutely unbelievable that my most popular posts have been disability related.

The first post to which substantially more people read, and the first shared more widely, was one I wrote at the end of last year, about David Cameron’s speech at 2012’s Party Conference. Specifically, focussing on two little words he used: ‘Compassionate Conservatism. Now, a complete oxymoron…!! This particular post was also (he claims!) read by my MP, – WOW! My most popular post ever, I wrote very recently, about not being able to work, and trying to address the popular thought that if some severely disabled people can work, then why can’t every disabled person do likewise. To my amazement, this post was shared around upwards of 100 times, and has been viewed 400-500 times, at least! I’d never have thought my most popular post would be about these things, rather than something completely personal or something faith-related that I feel I know more about. I suppose I just am ‘myself’ when i write, as much as anyone can be, of course.

Another post read a lot is ‘The days that changed my increasingly complex life.‘ It was the first time I wrote about something really personal, and what I thought and felt about it too. The reaction to it really surprised me, as some people got a lot out of it. Those kind of posts seem to be the ones that really strike a chord with people; again, something that surprised me. It was reasonably natural, though tough, and painful, to write about, as I am very much a ‘heart-on-my-sleeve’ person. In some ways, the people who read this blog have shaped what I write about.

I used to answer more of the ‘daily prompts’ provided by WordPress, as i lacked the confidence, and often the inspiration, to come up with my own topics. This has got easier as time has gone on. Also, given the squeeze on welfare claimants that is about to get so much worse, the stereotypes peddled by the Government, and some sections of the media, and the ‘hot potato’ that is the Welfare State, the topics offer themselves at the moment, and it is also topics that are a big part of my life, whether I want them or not. No benefits, no money, therefore no independent life. As my Mum says, they didn’t bring me up to sit on the sofa for the rest of my life… so I really value the semblance of a life that I do have, and it gives me much more to write about than if I sat on the sofa the majority of the time!!

Welfare State: Benefit Britain 1949

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Below is my thoughts on Channel 4’s ‘Benefits Britain’ programme, aired 12/08/13 at 9 pm. If you live in the UK, I am sure you can watch it online. Be warned, this post contains spoilers! You don’t have to have seen the programme to be able to debate the issues raised… this is currently a ‘hot potato’ about which nearly everyone has an opinion. Would love to know what happens in other countries too, when people are unable to work, for whatever reason.

I have to admit, I was rather skeptical whether Channel 4’s latest programme about the problems with the Welfare State would prove anything. This time, they went back to 1949’s rules about who should, and should not, get benefits. For television’s sake, redecorated a couple of buildings to look similar to 1949’s equivalent of Jobcentre Plus, and gave the 1949 rule-book to a couple of welfare assessors with 60 years experience between them. It was interesting how much tougher the rules were. If you had paid into the system, you got the equivalent money you would have got in 1949, which meant initially that Melvyn and Karen got money, and young Craig only got emergency money of about 7 pounds for a week.

It was interesting to see how much the assessors were allowed to meddle in people’s lives, but it did mean Melvyn got help when he was unable to cope. His brother and sister were too elderly to help, and none of the neighbours said they had any time to help him. This, I think was one of the saddest parts of the programme. If this was genuinely happening in 2013, then he could have been struggling on his own, in debt, with no-one to help. This has actually happened, where people have eventually died of loneliness and starvation because they have been unable to cope and no one has noticed. Back to Melvyn later. (I’ve been calling him ‘Norman’ in my tweets!! D’oh!)

What of Karen? Overweight, with diabetes, heart problems, arthritis, and the rest. She did not welcome the benefit assessor “‘spying'” on her, or the intrusion into her life, but it did transpire that her son did almost EVERYTHING for her. What kind of life does he have? He’s an adult with his own life to live. This kind of thing makes me very uncomfortable, even more so where younger, teenage or child carers are involved. Twitter was not kind to Karen in general, especially when her attitude was on show, and the swearing started. The medical was interesting too, as it asked her to do practical tasks which actually have a bearing on real life! Invisible disabilities were not recognised in 1949, as I expected. She was judged to be capable of ‘light’ part-time work. I’m sorry, but even I do more than Karen round the house and that’s even though I have carers to do the really difficult things. It’s wrong to compare disabilities, but I live with chronic pain, like she does. There is nothing for it but to get on with it. I was hoping the workshop type environment would help her, but she refused to do anything, instead breaking down in tears. I am glad the public have seen how being contant agony can wear someone down, as it is something which can have a profound impact on your quality of life. However, this will be lost on people because they were too busy judging her weight, and saying all she did was sit on her bottom. The last bit was true. It is very difficult to lose weight when you have mobility problems to begin with, for sure, but diabetes and so on does not have to be a disability. I know people with severe diabetes who work or have worked all their lives. I think part time work would help her self-esteem and her confidence, and give her something to focus on besides the pain.  It is true that if she were judged capable of doing some work in 2013 she would not be on full benefit, as disability activists have rightly pointed out. Pain does play absolute havoc with your ability to concentrate and all the rest of it. Karen in a vicious cycle by the looks of it, similar to myself. You are in pain and unhappy so you eat, you are unable to burn it off, so you put on more weight, then you are in more pain, so you are more unhappy and you eat more… you get the idea. She needs specialist intervention to help her manage it all and lose weight, but it’s easy to judge when you only see edited snippets of someone’s life on a television programme. However, her attitude really did not help her, and won’t help her in 2013 either.

My friend Sue Marsh (@suey2y) thinks the producer specified which kind of people s/he wanted for the programme in order to stick to conventional stereotypes. It is true that Karen’s character at least was a stereotype; but she has gone further than this and said “Showing someone bedridden told they must attend WRA (work related activity) wld have been explosive”. This may be true, but someone laid in a bed with an invisible disability would be open to the same accusations that Karen was, of faking or exaggerating the extent of the disability. Also, if Twitter did go crazy, the press would swoop, and after the 5 minutes of interest in their story the person would be dropped for no longer being interesting.  In my opinion, it is the luck of the draw who reads the medical form which describes how your disability impacts your life – I got someone who understood, and I also had lots of pages of close handwriting explaining everything. Someone also said on Twitter that each person was a stereotype: an older person forced to go into a home; a wheelchair user, and a ‘malingerer’ with invisible disabilities.

The final participant, Craig, , who has spina bifida and uses a wheelchair, was completely lovely. Initially he only got emergency help of £7 something as he has never worked. Not because he didn’t want to work. He was completely capable, but had just never been given a chance. However, he was given a training allowance similar to his benefits now, a medical, which rightly judged sedentary work to be best, and a day’s work experience in a call centre. He did brilliantly. More of that later.

The programme raised at least three interesting issues:

1. Disability quotas, introduced after the war and abolished in the 90’s once the Disability Discrimination Act came into force in 1995 forced employers to take on a certain percentage of disabled workers. If they refused, they were punished accordingly. Equally, the numbers of disabled people of working age in work was much higher, about 94 per cent compared with just over 40 per cent today. It was heartbreaking to see the likes of Craig, lovely, with a great attitude, who desperately wanted to work, unable to get even work experience in 2013. He had never worked, so had no work experience, so could not get a job, a vicious cycle he could not get out of however hard he tried. However, the 1945 system gave him more results – work experience, and a job offer, which he gladly accepted. Should ‘disability quotas’ be reintroduced into the workplace?

2. The issue I discussed in my previous post, that one system of assessment does not fit all. There was no “‘mass production'”  but instead, a completely individual, ability based approach was put in place instead. Of course, they were dealing with much smaller numbers in 1945, and mostly war-wounded or industrial industries, which is completely different to someone with multiple impairments today where it is hard to say what work is suitable if any. Of course, I would not have survived birth in any age before now, nor would most of the babies born with multiple impairments who will never be able to work. They simply would not have survived. There are debates to be had about how much intervention is too much, and what constitutes quality of life. However, that is a debate itself and for another time.

3. As was mentioned in the programme, some of the impairments which Karen had existed, but were simply not recognised. The female assessor asked at the end of the programme whether it was right that 2013’s sickness and disability recognise a wider range of impairments. People are living longer, and therefore develop more complex health needs, and the state cannot afford to keep giving out. However, where do you draw the line? I bet if you asked people on the street that each person would give a different answer. Twitter was vocal, and almost unequivocal – Karen was ‘fat’, ‘lazy’ and ‘should’ get a job. That’s putting it mildly. To give you an example, @CavanaghJess said: “Being overweight and diabetic is not disabled love. GET A JOB!!” As was pointed out on twitter, if she was ineligible for benefits they would have been taken off her, or not given in the first place, but her situation does raise difficult questions. We ignore them at our peril.

Someone on twitter did question whether Karen could work in a call centre, but she could work in an office if she had voice activated software that would answer the phone for her, and she could speak to the computer what she wanted to say and software would type. She might be eligible because of her chronic pain and arthritis, however, Access to Work, the Government Grant scheme which pays for help an equipment disabled people need in order to work no longer provides this, so it would depend on whether an employer was prepared to pay the costs. If a small business owner was faced with a choice between someone healthy, with a compliant, friendly attitude, who was prepared to work hard, or someone who needed adjustments made and potentially expensive equipment bought for them, there is no way someone like Karen would have a chance of employment.

At the end of the programme, the three guinea pigs, sorry, participants all met up and were asked by one of the assessors who they would give the benefits / allowance to if only one of them could have it. Melvyn, the pensioner said Craig was more deserving than he, despite his tough experiences in the programme. However, Craig refused. Karen then kicked off and said she had more wrong with her than Craig and therefore deserved it more. Karen and Craig both had different attitudes to their disabilities, and it really showed.

The two assessors both had questions at the end of the programme. One, questioning that there’s something really wrong with a system if it cannot provide for the most vulnerable (hear hear!!) and the other assessor questioning whether the range of conditions considered for help was too large, and questioning whether the system should keep giving handouts. Would love to know what you think!

There was a lovely moment at the end of the programme where the ‘assessors’ gave Melvyn back the watch he had pawned in order to survive (his grandfather’s) but many others have to do the same, with no one to buy it back for them.

Would love to know what you all thought of the programme, or indeed if you have any opinions on, or answers to any of the questions raised in this post 🙂 Until Friday…

 

The Welfare State: One system fits all?

jacksdavie1 Comment

Successive Governments have wrestled with the same challenges – How to provide money and support  to those who need it, who are unable to work through no fault of their own and encourage those who can work, back to work. It sounds simple if you say it like that. This current Government seem to believe it is simple. I wholeheartedly believe they still think that the most vulnerable in our society are being looked after. There are horror stories emerging all the time, whether it be people losing their appeals, others who are under such unbearable stress from assessments or appeals that their bodies simply give up, or they are so desperate they take their own lives. You need only type ‘ATOS’ into google to see that this is the case. ATOS are the French IT company charged with deciding who is, and who is not capable of working. There are also numerous support groups on the web where those at any stage of the process can share their stories or support others. ‘ATOS miracles’ is one such Facebook group, so called because some who really cannot work are being found fit for work by ATOS, thereby a miracle has happened, or at least they’d have you believe that anyway…

Even among the numerous stories, there are some that really stand out. A teenager who has always had full entitlement to care of mobility benefits at the highest rate all through childhood, whose family now has to negotiate the adult system on their behalf, really cannot work, and will never be able to work, and yet, has to be re-assessed. On paper, it really doesn’t sound fair, to Jessica, her family or the system. A waste of their time, energy, and needless stress, and a waste of taxpayers money. Perhaps the family do not realise this yet, but reassessments will happen anyway under PIP (Personal Independence payment) every few years. This is the benefit that has replaced Disability Living Allowance, which used to compensate people for the numerous extra costs associated with disability. Believe me, being this disabled is expensive!! I used to have DLA indefinitely, in theory, for life, but this has now changed, and will be the same in this case. The theory goes that it is impossible to police the system if there is one rule for some and another rule for the rest, and yet there will be such a waste of money. In the case of Incapacity Benefit and Income Support and now Employment and Support Allowance (ESA) there used to be a solution, for the likes of Jessica, called the Youth Supplement, given to only the most disabled youngsters. However, this has now been axed, the latest loophole to seemingly go in order to streamline the system. Sounds fair, but was it? I have borrowed the explanation from my friend Sue Marsh, who despite chronic illness and acute, constant pain, campaigns tirelessly for change on behalf of sick and disabled people everywhere. You can read the rest of the post here.

It was called the “Youth Premium” It only related to children who were born so profoundly disabled that they would never work as adults. Forget your Work Capability Assessments and your Scroungers, these children would never take part in society like you or I. Many would never talk, self feed, walk, play, laugh, fall in love. But they could still lead independent lives. Because we were a society that believed they should have a right to if they chose to.The Youth Premium treated these children as though they had paid National Insurance. For a cost of just 11 million pounds, on becoming adults, these children were treated as though they had “contributed” through work and because of that, they were entitled to contributory benefits, they did not have to be means tested.Such a simple thing, but what did it mean in practise? What did it mean to the people behind the numbers? The lives being toyed with? It meant they were entitled to live independently if they chose to. They were entitled to benefits in their own name, not as a means tested part of their family. Often, such profoundly disabled children had considerable compensation to see them through lives damaged beyond recognition by accidents. This compensation was just that. Money for an expensive future of care, adaptations to homes, aids to independence. For a lifetime, this money would have to pay for support just to make their lives as manageable as society could achieve.No more. Any money would be part of the means test. They would have to run down reserves of cash or savings before the state would step in. Compensation is not income. Nor should it be. From the passing of the welfare bill, any security or savings put aside by families terrified what life would hold once parents or siblings had passed, would have to slowly seep away, leaving insecurity and hunger a shadow away before these few profoundly disabled neighbours and daughters and brothers could rely on any help or support from the state.

A bleak picture indeed. One only hopes the state is then in a position to step in. If it has to be a case of one assessment system fits all then surely it should be a case of one assessment for all support combined. Then if there has to be stress, it need only happen once. Now there are repeat assessments that doesn’t seem likely. Benefits Britain 1949 on Channel 4 tonight at 9 is looking at how we who are unable to work through illness or disability should be supported. Perhaps, finally, someone will come up with some answers.

The welfare state: If Hawking can work…

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English: NASA StarChild image of Stephen Hawking.
English: NASA StarChild image of Stephen Hawking. (Photo credit: Wikipedia)

Last year a majority in the British Medical Association have come out in support of disabled people, declaring the Work Capability Assessment (WCA) unfit for purpose. Additionally, after many months and much campaigning by disabled people, ATOS Origin, The French IT company given the contract to oversee self assessments and carry out face-to-face assessments, have been forced by the Department for Work and Pensions to retrain their staff. This is even after previous insistence that everything was fine and ATOS would not be fined, despite  appeals overturning the previous decision that the person concerned was fit enough to work costing £66 MILLION in 2012-13 alone!! A report published by a coalition of more than 90 Disabled People Organisations and Charities in 2012 produced a damning verdict as to the impact of assessments and cuts on disabled people. In particular:

  • Nearly 9 in 10 (87 per cent) welfare advisors said the constant re-assessments for benefits are damaging people’s health
  • 9 in 10 (90 per cent) welfare advisors said that too many disabled people are slipping through the net and are left without adequate support by the welfare system.

Mencap have also raised concerns over whether there is enough understanding of the way learning difficulties affect people, and how this impacts on a person’s ability to work.

Despite all this, GP Philip Peverley has recently claimed that: “I had considered, at one point, putting,  up a portrait of Professor Stephen Hawking in my consulting room with a caption that said, ‘This bloke is not on the sick’.” To those who are entirely unaffected by the benefit cuts, and have no reason to disbelieve the skewed headlines produced by some sections of the media, this kind of statement may well make sense, and is the kind of logic behind the Goverment’s portrayal of benefit claimants as ‘scroungers’. However, to think this, and indeed, to declare it publicly is to completely gloss over a whole host of issues which he may well know nothing about which prevent disabled people accessing work, and a host of medical issues which make work difficult, some of which I have described below, This is to say nothing of possible discrimination, access barriers including need for specialist equipment not covered by Access to Work Grant, difficulties getting to and from work, and lack of transport to get there, extra costs, pain, fatigue… the list goes on.

I admit there may be some truth in some of what he says including that some people well enough to work to everything to prove they are too ill to do so. If there weren’t there would be no need for reforms, however, the levels of fraud are not nearly as high as the Government would have you believe. However, according to the article, “A poll of 4,000 family doctors by the Department for Work and Pensions in May showed three quarters feel that – even when there is no medical need – they are obliged to issue sick notes to patients”. This may well be true, and it is not the first time I have heard a GP asking that they could opt out of assessing patients fitness for work. If not they, then who? GP’s position as ‘Gatekeepers’ to NHS services makes them ideally placed to have overview of the main issues affecting a patient and the clinics they see and services they receive. I have already established that ATOS are in no position to do this on GP’s behalf, despite Peverley’s claim that “ATOS nearly always gets it right”!! He has also failed to acknowledge that Hawking is able to to pay for costs associated with his disability in ways that the majority of disabled people can only dream of. Money means access to better care, better food, higher quality housing and a better quality of life in general. This will have a positive affect on his impairment, despite its severity. He is so intelligent he can work using his voice only and has all the support he needs, something very few disabled people can say. Journalist Sonia Poulton‘s response to this article was to post a tweet containing Peverely’s reg. number for the General Medical Council for anyone who wished to complain!!

The last time I worked was in 2004. I did the kind of office job referred to in the article. I did full time (8.30-5.00) work for 6 weeks to cover sick leave, in the summer holidays while I was a student. For two weeks, I walked to work while my parents were on holiday, or I got a lift from colleges if they passed me on the way to work. Otherwise, my Mum drove me there and back. I don’t remember if there were steps in front of the building or not. I do remember that there was a lift. This was in the days when I was still on my feet, without a walking aid, or a wheelchair, except I used a scooter in term time to negotiate university grounds. I was also on minimal medication, and no prescribed painkillers. This was the year before my diagnosis of Chron’s disease too. This is all significant, because by the afternoon, I would have severe shooting pains from my hips to tips of my toes, and often stomach cramps too. I would be so tired I would have uncontrollable giggles, and my speech would be slurred. How very professional. I struggled to concentrate to do meaningful work, and I made mistakes. I was never disciplined over it though. Clearly not capable of office work, despite this doctors claims.

What about if I were to attempt this work today? Well, before I got to work I would have to be up very early because it would take me a long time to get ready. If my carer phoned in sick, the office may not be able to cover it, as I am often the first name on the rota, and not every one can work that early. Even with care, I often have to go back to bed to sleep off the effects of a disturbed night, or the effort of getting up and organised. If I did not do this, I would be asleep at my desk. This is often the case even try to write blog posts, which is why there was no post on Wednesday this week.

What about getting to the office? I am unable to drive because the part of my brain responsible for spatial awareness is too damaged, and reaction times were so erratic in the simulator during my driving assessment the Occupational Therapist advised that I would need to use hand controls to be able to drive but that I lacked the necessary co-ordination. Getting the bus is also out of the question, as I do not have the strength to propel my annual wheelchair on my own, and my electric wheelchair is too big. Taxi it is then. However, most taxis are the wrong size or shape to fit my wheelchair, and those it will fit are in demand. Even if I can get one, there is often no space between my head and the roof off the car, causing me a head injury if it crashed. I have been in town before, and even though I have pre-booked a taxi to take me home, none will turn up. I would need a motability van, but as I can’t drive myself, I would need a PA to drive one for me, even though funding is being squeezed in every budget including Access to Work, and the list of things which can be funded is now minimal. Add in cuts to social care and the disappearance of the Independent Living Fund in 2015 and this is an impossibility. (To read about the impact of these cuts on another disabled person, click here to read an excellent piece for the Indy’s Comment is Free by Jess Thom).

Assuming I could get there, I would not consistently be able to do any work for so many reasons… My pain killing medication exhausts me, making my speech slurred, and even then it does not take away all of the pain, and I often squirm in my wheelchair due to back pain, and other pain I cannot write about in a public forum. Then you add in the times my ileostomy bag bursts (which I cannot change by myself, and the bladder spasms causing me to wet myself. Have I forgotten anything? The last time I filled in a WCA form there were at least 3 or four extra pages of close written small script explaining my disabilities and the effect these have on my day to day life, including all the equipment I need to help me. Still think I can work?

Of course, I would love to be able to work, but at the moment is something I can only dream of. One of the reasons for starting this blog was to give another purpose to my day. I have been surprised and delighted to the response from my first post for a few weeks, about childhood dreams. Before you lose the will to live, I shall go off and take my medication, as the dispenser fondly known as the UFO is making itself heard! Until next week…

When I was 10…

jacksdavie6 Comments
Dream
Dream (Photo credit: Xtream_i)

I don’t actually remember what I wanted to be when I was growing up. It took me until the age of nine to be walking unaided without any supports on my legs! At that point, I just had arch supports in my shoes, which I hated so much I refused to wear them. They did hurt my feet terribly tho!

If I remember back to playground games with my friends or ‘imaginary play’ indoors, from what I can remember most of it involved pretending to teach. I do remember filling in a long form in my final year at school which was sent of, my answers were analysed, and the careers advice they gave was that my personality and gifts were best suited to teaching. The careers adviser pointed me towards Stirling University, who at that time were the only Higher Education Institution offering the Bachelor of Education certificate alongside an ordinary arts degree. As I have blogged before, I did go on to do this course for three years. Despite giving it my all, I subsequently failed and was chucked off the course. The emotional fallout and impact on my life, and my dreams was devastating. If fact, it’s not too dramatic to say it was actually life-changing, one of five days to be so.

Fast forward about eight years, and my life has totally changed. Any childhood dreams are in tatters, as I am now unable work, and my life revolves around visits from carers, nurses, trips to hospital for appointments, home visits from specialists, and form filling. This blog, my family and friends, and my church family are the bright spots in an otherwise ‘ground hog day’ sort of existence. As  for my dreams, on good days, I still have those, though for the most part they are locked inside my heart. On bad days, I even struggle to blog or fail completely, sometimes for weeks, meaning I have to build up a following all over again. I refuse to let any of this beat me. My Jesus has promised me an ‘abundant life’, which I continue to pursue.

mirror, mirror

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The Mirror
The Mirror (Photo credit: Wikipedia)

 

When I look in the mirror, I no longer recoil. Most of the time I like what I see. The teenage, pussy acne is gone. In it’s place is a pretty face. Nothing too out of the ordinary though. I remember in my teens, my mum standing with me in front of a mirror telling me I was pretty. I know this kind of thing has been bashed in the press recently as encouraging arrogance, vanity, and esteem based on looks. That day in front of the mirror really helped me though, which is partly why I’ve never forgotten it.

 

When I look in the mirror I see the face God made, the smile people are attracted to, the person he created me to be. My face is the one part of me that is not disabled in some way. I do refuse to have a full-length mirror in my house though. I hate to walk (shuffle, really) past them due to my wonky posture; my backside sticks out and my knees are twisted… it says to me, ‘spaz’. I was once at my mum’s friend’s daughter’s birthday party in my teens and walked past a full length mirror in the ladies’. This is when I first realised the wonkiness, and wondered, is this how others see me? It is something which, rightly or wrongly, has almost haunted me in a way. When I pass a mirror, I prefer to sit in either wheelchair as, although I am sat, my posture looks more ‘normal’. I wonder if anyone else out there who has a disability sees themselves that way?

 

When I look in the mirror, I one day hope to only see the person God made, with none of the twisted knees, sticky out backside hangups. I guess most people have hang-ups about the way they look. So far, so normal!!

 

Fall(s)? Leave it to the expert!!

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Though I be only young, I consider myself an ‘old pro’ at some things, having experienced them over and over again: hospital appointments, meds, blood tests, ex-rays, scans, blood tests… and falls. My parents worked so hard to help me to walk. Dumping me on the floor as a wee one, and making me crawl to the towel. Plastic splints, special boots, crutches, zimmers, I’ve used them all. I’ve fallen on all kinds of surfaces: concrete. tarmac, orange tarmac, sand, bark… I’ve been picked off the floor by all kinds of people, and I myself am an expert! When I fall, I can do forward rolls, backward rolls, back flips, avoid obstacles by automatically throwing myself in the opposite direction. My brain has taught itself how to fall. Others have been in awe of me, many times. I think I’ve found my gold-medal winning sport…

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This post is part of five minute Friday! Leave me an encouraging comment, and then head over to Lisa-Jo’s site and have a go yourself!

 

Movie of the year?

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Yesterday’s daily prompt caused me to look at it twice! I have often be told that my story would make a good book, or that I should write my story down one day. I guess I have done this in partial way as some of this blog includes memoir style material. As I know who I would love to play the lead, I would love my story to be a book and a movie. Carey Mulligan would be perfect to play the lead in the movie version of the book. Great actress who would draw in the punters, and who has played characters in movies belonging to the drama genre before, including but not limited to her role in the likes of An Education.

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This biopic certainly includes plenty of drama. More than one near death experience, disability, illness, life-saving operations, love, romance, faith, and miraculous scenes, including a couple of appearances from royalty…. There are also many supporting roles, with a great support cast. There is also potential for future movies given the relative youth of the protagonist… However, let’s focus on this particular movie for now.

Drawing of a film reel
Drawing of a film reel (Photo credit: Wikipedia)

It begins with my early life, with me being rushed to a special care baby unit, having been born 12 weeks premature at 28 weeks gestation, following an emergency birth. There is a touching scene early on, and the first of the miraculous moments, which shows the story of how I got my name. Some of the crucial scenes in my early life will keep you on the edge of your seat; including visits to resus, and touch-and-go operations where I was the smallest baby the surgeon had ever operated on.

My early childhood was no less dramatic, as my brain was starved of oxygen at some point before, during or after birth, resulting in a diagnosis of Cerebral Palsy. The diagnosis was certainly bleak, as it included intellectual delay as well as physical disability, and the extent of these was unknown at the time. Consequently, from a few months old until I was 3 or 4 I attended a centre for babies and children with special needs. Here i received input from a pediatrician specialising in Cerebral Palsy, physiotherapy, and specialist care. The next miraculous moment shown on film would be that I had progressed enough to be one of the first children with a disability in my region to attend a mainstream nursery. I would later meet 2 of those who had attended this nursery at secondary school!

Some time after this, there was a house move to Dunblane, where I attended nursery, and went to the same school that Andy Murray, tennis player extraordinaire would later attend!! In my first two years at primary school I had a full time assistant with me due to my level of need. When I was six, we moved back to Aberdeen.

In some respects, my primary school life was largely uneventful when compared to the events of my early life, so this would play no part in the review, though would occupy a few scenes in the movie. Miraculously, I caught up intellectually, and when I was 11, had no further need of the assistant who was with me for four years, as I was able to continue primary school on my own. This caused a ruckus at the time. Secondary school too would play no major part in the movie. There was a house move at age 14, where I stayed until I moved to central Scotland to begin my first degree in 2001. It was here I would meet some of the friends I still have today, and where I would meet my current ‘Special Someone’… though a little more of that later!

The move to university was one of 5 days which changed my life forever, and the events of these 5 days, or even periods of my life, would be the focus of the major part of the movie focusing on my adult life. The only exception to this would include a scene with my childhood ‘adult baptism’, in which I explain why Jesus became the central focus of my life, (or certainly should have been!!) from then on. The next part of the movie would include university days, which showed the beginning of adult illness.

Further scenes became more dramatic, including a move across the border, a life-saving operation, the scene in which I was told I would now require an electric wheelchair full time, and the scene in which I was told I had no choice but to have the ‘care’ I had tried to avoid from age 22 when other disabled friends begin to suggest it, Other scenes include a couple of romances, one on/off romance with a childhood best friend, and another with a former Paralympian!

The movie ended with an update to the present day, showing some of the complexities of life as a wheelchair user who needs help with the basics of life, but has a stellar supporting cast, including the events which explain the introduction of ‘Special Someone’, and the reliance on faith to survive, and thrive through every day, eventful or not. The movie therefore fits the ‘Christian biography’ category, but is far less cliched than some representations of the genre!!

To be continued…