Writer in the making….

This is Part 2 of the Weekly Writing challenge from 24 March. The prompt went like this:

Every superhero has an ‘origin’ story of how they came into being. If applied to myself, How did I begin to be a reader, and eventually a writer? 


 

An embarrassing start

I th­­ink I was about seven or eight years old when I attempted to write my first story. It was simple and I tried my hardest to write something good. It was definitely a love story. I remember being quite pleased I’d written something from scratch, all by myself. I must have shown my Mum that I’d written it. My family was there one tea time or something, I think my Grandparents were there too. I remember Mum telling me to go and get my story, and how desperately I wanted to say no, because it was not good enough for people to hear. However, I reluctantly brought it.

I remember my mum saying, “this is the kind of stories she writes… and she proceeded to read it out loud. I distinctly remember wishing I could disappear, acutely embarrassed at what was happening, but worse was to come. Mum finished reading it, and everyone laughed, lots. I remember wishing I had hidden it away and not shown anyone.

I wish I had been able to forget it, work on my vocabulary and practice my writing more. The incident when I was 8 really sucked the confidence out of me. I’ve always allowed myself to dwell on embarrassments. I don’t remember writing stories after that. I did write occasionally when 10 or 11 in a diary with a gold padlock and a polar bear on the front. I only wrote stories in school though not always successfully, the rubbish I wrote when asked to write about a chocolate factory being one example! I did have more success with creative writing at secondary School and University, though I never wrote in my free time.

Nowadays, memoir is usually my favourite style of writing, as I love telling stories of memories I have, people I have met, and events I have been to, as well as a spiritual record of the ways God has used the difficult things, as well as the good things to mould me into the person he wants me to become

Lots of my experiences and everyday life in general differs from the norm because of my ‘being unable to work’, through being both ‘sick and disabled’. A fellow Chrons sufferer started writing and campaigning because she was desperate to have this description recognised. When I read that in a tweet I remember thinking — ‘I am so glad someone’s managed to lobby for that and been successful, as well as relief that I wasn’t alone.

Equally when I write posts and publish the material in my blog, if other people comment that I am I not alone in whatever I write about whether it be discrimination of some kind, difficulties coming to terms with health problems or whatever and share their own experiences, it reassure me I am writing about the right things, and I feel privileged others are sharing their experiences with me.

I’ve also written about news items, popular topics, or a longer comment on things I’ve read on other writers’ blogs. I didn’t think I would enjoy writing about current affairs as much as I do. I had a complex that I wasn’t knowledgeable enough, or enough of a campaigner to write on disability issues. However, some people have seemed to get a lot out of what I have written on the welfare state, especially people who previously did not know a lot about it. There are times I manage to engage others, and get a proper discussion going such as a post I wrote in response to a GP’s comments that the majority of disabled people could work if Stephen Hawking can! This went viral, receiving almost 400 views in one day and causing a lot of debate on social media, both in support, and in criticism of my arguments. (I have always loved debate, but was never confident enough to join the debating society at school, despite my Mum’s encouragement at the time).

My dreams slowly grew as I continued writing. At first, I was happy writing solely for the ‘Big Bible’ website. Then I started my Blog because a discriminatory experience buying glasses in Specsavers got me so fired up I had to write about it! As I wrote, I wanted to write more. Others liked my writing and began to read regularly, ‘liked’ my posts, and my confidence in my writing and in myself increased. This continued for at least a year, however, I found that I became unable to write consistently especially since my health has deteriorated. This has really hurt my confidence, because I very much wanted to write and I would often find that I couldn’t. Obviously the numbers who read have fallen dramatically.

For more than ten years, friends and family members have urged me to write my biography. Blogging has given me confidence to think about doing this because so many read and ‘followed my blog at one point. I started off writing a diary of hospital experiences because I wanted my story to from the ab differundance of other biographies out there. I still haven’t decided what to do because I feel totally torn. Is my story ‘different enough’ to write about on its own, and if so where would I start? And what about the thousands of words I have written so far? Writers, do you have any advice / Suggestions?! As for publishing, who knows, there is much too long a way to go before I need to think about that, surely?

I write for the same reasons I Blog. I wrote something this time last year called ‘Drum Roll Please’. I wrote the following about having a way to express myself. “[T]o have found an outlet which I enjoy, uses my gifts, engages my brain, and connects me with people who have similar interests is a joy.” Slightly clumsy phraseology, I admit, but does largely capture how I feel about writing.

God is using me, and my writing. Writing helps me to explain how my faith makes a difference to the difficult times in my life, of which there are plenty. I hope and pray this will be a witness to those who read it. I decided early on that as much as possible I would keep my blog ‘real’, by writing honestly, including the good, the bad, and the ugly, without dramatising things but also without glossing over the tough stuff.

I am mostly confined to my house, but reaching others from my living room! About a year ago, I wrote the following:

I aim to inform as many people as [I] can about the complexities of life with significant needs, and deep Christian faith and to live as full as life as I can. I am aware of other disabled people I know who live fuller lives than I, even with a more significant physical impairment. Though I would sometimes wish my life was more varied, in general blogging is my way of being ‘out and about’; reaching people I would not otherwise meet and finding a creative outlet, while having a lot of fun at the same time!

By searching and reading I am constantly learning, keeping up to date with some of the changes to policy, practice, disability laws, news, and current affairs. I have to discard the scare stories and keep only the useful information if that makes sense. I keep writing because I want to continue to reach out to others, especially those who live with constant health challenges, as I and many others do, and to encourage people, impaired or not, to learn to keep going when life gets extra hard, because giving up is not worth it in the long-term. I continue to need a way of using my God-given gifts, and of continuing to learn new things in a fast-paced world.

I heartily wish that when I was young, I had persevered, and learned the true discipline of getting up early, pouring a drink, and having time ‘quiet time’ to read my bible and pray, before writing for a few minutes, even. I’d like to write daily, and sometimes manage it for a few days at a time, but don’t keep it up as I then sleep through my alarm, or I can’t keep it up as my health gets in the way.

My favourite time to write is early in the morning, say beginning between five and five-thirty am if I can physically manage to wake up when the alarm goes off, and slide into my wheelchair. I sometimes use prompts such as this one from WordPress, 365 Days to Build a Better Blog (Rowse, 2011) or for girls and women Robin Norgren’s books, including Writer Girl (Norgren, 2013) . I had the privilege of chatting with the lovely Robin for a Skype jam session or two a while back. The ‘days’ aren’t meant to put the pressure on for you to write every day, but simply when you have the time, energy and head-space.

Please do let me know if reading my story of my own clumsy beginnings as a writer have encouraged you to have a go for yourself, be it with scrap paper and pencil, fountain pen and fancy paper, spoken memories on Dictaphone, iPod, or mp3 player to write later, or laptop / iPad and word processor.


To have a go at this challenge for yourself, click on the blue text (or tab to the word “challenge at the bottom of this post and press space if you have a screen reader).

Bibliography

Norgren, R., 2013. Writer Girl: 42 Days of Exercises to Deepen your Faith in Your Ability and Your Purpose for Writing. 1st ed. s.l.:s.n.

Rowse, D., 2011. 365 Days to Build a Better Blog. 2nd ed. s.l.:http://www.problogger.net.

 

Care, employment and families – big week for disability

Trust the Government to squish debates on such big issues into the last week in the hopes not as many MP’s will attend / notice / care. As usual, as mentioned by Scope, the numbers of people now not qualifying for care, and therefore having little or no help to prevent a health or care crisis such as a hospitalisation, means the cost to taxpayer escalates despite attempts to save money. Typical Government too, to underestimate how much money good, ‘preventative’ social care costs.

Also, it has not been mentioned here that cuts to disability living allowance -500,000 less people are eligible or will lose out when assessed for it’s replacement. This matters, because the people not eligible for social care might have had the funds to pay for something, at least, but will now have no plan B, surely increasing demand on all fronts. Also, people eligible for social care could previously use their Disability Living Allowance to ‘top-up’ their care, though for many, once assessed for PIP, their benefit amount will be less, if eligible at all, and therefore a further gap in funding exists. The only funding which ‘tops up’ the gap a little is that after several attempts, the Government were unable to close the Independent Living Fund, used to pay for care for those people judged most severely disabled, after the decision was quashed by a last-ditch appeal attempt. However, as this money goes to a relatively small number of people, there is still a massive shortfall. Yet again, the Government has failed to understand how difficult, and complex life can be when you are sick and/or disabled, and just to be seen on a par with your peers requires significant mental and physical energy, and considerable extra costs (phoning ahead, transport, planning for toilet stops, meals, medication… heck, just getting up and dressed even with help, can be beyond me some days!! Those who are able to be on a par with ‘normal people’ in the workplace, in home-life, and comminity life can, and should be given this support — yes, perhaps at quite a big cost. However, to not plough money into it will cost something greater — physical and mental health of sick and/or disabled people will deteriorate costs health and social care systems more in the longterm, and especially where there is also increased pressure and stress from wrong benefit / tribunal decisions too, lives.

Scope's Blog

It may be the last week before Christmas, but politicians are making time between mince pies and mulled wine to look at a couple of important disability issues.

Today MPs have their first opportunity to debate the Government’s plans for reforming local care – including capping care costs for elderly and an end the postcode lottery in care.

Councils say the crisis in social care sits behind big health issues such as pressure on A&E and GPs – if older and disabled people don’t get preventative, community care, they risk becoming isolated and slipping into crisis.

The Care and Support Alliance – representing 75 charities – is today saying that the bill is a real achievement but risks being undermined by a funding black hole which has forced councils to restrict who gets support.

The CSA has published new research from the LSE that reveals that if we had the…

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Welfare State: Benefit Britain 1949

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…

 

Syal sticks up for disabled people!

coins
coins (Photo credit: Wikipedia)

I posted the following on my Facebook page today as a ‘status’ but then decided what had been said merited further thought, so I decided to write something here. The following is what I wrote on Facebook.

While I was watching the Andrew Marr show today, I heard panelists talking about £1bn being lost in tax avoidance because companies are now conducting are their affairs through Ireland. Meera Syal then said “I can’t believe nobody’s doing anything about it, given that I know at least 3 or 4 ppl who are literally on the breadline because their disability benefits have been cut.” When you put it like that, it shows just how inconsistent the Government is being, especially when you consider that ‘Dave’ talked about ‘Compassionate Conservatism’ at the last party conference. Where is your compassion now, David Cameron?

I listened to this part of the programme a couple of times to type exactly what Syal said. Listening to the rest of the discussion, I quickly became disgusted as her fellow panelist seemed to casually dismiss what she said. Only Nick Robinson (standing in for Andrew Marr) attempted to discuss what Syal said, he too brushing it off by saying that at least politicians were ‘starting to’ realise what was going on, and talk about how to sort it. Sorry, but they could talk about it forever more but that doesn’t mean the problem will be solved. The other panelist then talked about how the companies would say this sort of inconsistency was down to the Government and the law-makers, and is about getting the balance between bringing in money from taxes and lowering corporation tax so that these companies could work from this country, but without addressing the inequality which Syal had tried to bring their attention to. Syal then said this situation was ‘immoral’. However, Robinson was keen to move on, asking the other Panelist to begin discussing the next story of interest. A little later in the program Robinson interviewed Theresa May, largely concerned with the fallout from the shooting of the soldier in Woolwich. May claimed Cameron ”has a grip on the terror laws, reducing the deficit, and a grip on reform of the welfare state” I beg to differ. as I did at the back-end of last year, both with Cameron’s approach to reform/cuts and the motives, or e-motives, behind his, and his party’s actions.

Perhaps Robinson would say there was no room to discuss Syal’s concerns; it was not in the script/autocue. However, they have plenty of time to talk about the same story over and over. Perhaps they would say it was ‘in the public interest’ to discuss this story. However, the discussion that there was surely shows the blatant lack of thought for the poor of this country. There is no escaping it when the truth is highlighted so baldly.

We ignore those on benefits and the ‘working poor’ at our peril… time will tell just what the consequences of this inaction will be. How much more can people be squeezed? Apparently the delivery of Universal Credit on the deadline is in doubt, hurrah!! Watch this space in the coming months for more comment!

p.s. if you are from outside the UK, what is the Government’s attitude towards poor and/or disabled people? What help do you/they get if any? Do you agree with how you/they are treated? What, if anything, would you do differently? If you are from the UK, what do you think?

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.

Two stories, one theme: The Welfare State

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.