Tag: disability

Syal sticks up for disabled people!

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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?

helping hands (over and over again)

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I really wish I could answer this as it’s such a great question. It’s also incredibly appropriate to my life, as other people help me several times over every day. However, my mind has gone blank. I can remember snippets of help; two girls who washed dishes for me when I was unwell in my first year at university, others who accompanied me to hospital when I was extra poorly, many strangers who have tied shoelaces, helped me on or off the bus, back into my wheelchair when I’ve fallen out of it… as the cliche goes, the list is endless.

Not forgetting the many people over the years who have made meals, and washed up afterwards. The friends who really stand out are the ones who have done much to help me, just by being them. Those who never give a second thought to helping time and again; always on the end of a phone, or regularly meeting up for coffee or lunch, giving me a break from the monotony of routine, those who make me laugh at the end of bad day, yes, it’s friendship, but it’s friends who do more without even thinking about it. It’s testament to them that no one time they helped stands out. There are a few special ones. and even one special one I can think of who I cannot name here. There are also carers who become friends. though that brings it’s own problems. It’s one thing to help once, and another to help over and over again, so, thank you, my friends. My 30th Birthday Party was so special, because of all of you. Love you all very much!

The (6) impossibles…

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This is my answer to yesterday’s daily prompt.

“Why, sometimes I’ve believed as many as six impossible things before breakfast.” – the White Queen, Alice in Wonderland.

What are the six impossible things you believe in?

It took me some time to come up with six but I rather like the finished list!

1. I will live in this flat forever.

I feel so settled here it is impossible to imagine ever leaving. I guess I will one day but I don’t like to think about that. It may be sooner than I think with the benefit ‘reforms’ looming…

2. I will wake up thin one morning as if by magic
I like to think the above will actually happen, and not about the reality; months of denying myself things, and hard work

3. My body wouldn’t need naps.
Naps are good and healthy but some days all I do. I’d be able to control them instead of naps controlling me.

4. I will wake to the news that the House of Lords has forced a u-turn on the abolition of the ‘severe disability premium’ under universal credit. That would be sweet, but impossible, because what’s done is done. I can dream, right!!

5. Someone will invent lower calorie chocolate that is a match for the original and tastes amazing! Haven’t found any, at the moment, except ‘child size’ bars.

6. Esther McVey, the Government Minister for  Disabled People, will see sense and table a motion for the re-installation and reworking of Disability Living Allowance in preference to the ironically Personal Independence Payment.

I’d love to hear what you think of it, and see everyone’s list of impossible things! I’m such a dreamer. However, dreaming aids creativity, as does sunshine! Happy Tuesday, readers.

Why are disabled people fighting the cuts?

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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.

Lost in the fog!

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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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Book Review: Standing up for James by Jane Raca

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Jane Raca has written the book she would have liked to have read in the weeks and months following her son’s traumatic birth. Her son James was born at 25 weeks, (three weeks earlier than I was). James suffered catastrophic brain damage which left him with autism and very severe cerebral palsy, among other things. Instead of being supported as she might have expected and certainly deserved, Birmingham City Council failed to provide her family with even the most basic care, never doing a core assessment which would have ensured the needs of James parents and siblings were met as well as his needs too. However, “nothing happened” An oft repeated phrase, which meant Jane’s health and emotional needs were ignored, as well the emotional needs of her other children, and her marriage also buckled.

Two things shine out of this book: Jane’s love for James, and her son’s massive personality. I urge you to read this book, whoever you are: social work student, parent of a child with special needs, or just someone interested in their story. You will laugh lots, I can promise you that, it’s a very funny book. As well as cataloging the failures of the council and  chronicling her fight for appropriate provision for her son’s needs, Jane considers the ethical and moral issues at stake when children such as James are saved at all costs, and the implications of this for hospitals, local authorities and families themselves. You will laugh, cry, get angry and laugh some more. Go, on, buy it, you know you want to!

incidentally, Birmingham City Council have failed adults with disabilities and their families too. Several major charities took them to court in 2011 for changing their eligibility criteria (the circumstances in which care should be provided) from substantial and critical needs, to caring for those with critical needs only.  If Leeds City Council were to do this, the likes of me would not have any care provision at all. Fortunately, Birmingham City Council Social Care were judged to be unlawful, so they lost the court case and had to rethink their whole poThere are indeed currently many concerns surrounding social care which have been newsworthy of late, and new problems will continue as council budgets are further squeezed, especially when the Independent Living Fund (ILF) closes in 2015. This was a fund which provides money for care for those with the most severe needs effectively topping up money provided by social serves. This has been deemed too expensive. N.B. care is expensive! As a starting point, go and read Standing up for James!

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Dancing Queen

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At first, I had some difficulty thinking of a particular skill for today’s daily prompt. Then it hit me. I have always always I want to be able to dance. I remember school discos in embarrassment. Scottish country dancing practice in physical education was much worse as I was forced 2 dance with my 121 helpers when the whole thing was difficult enough. This was a reminder of just how uncoordinated I was. On top of that none of the boys would dance with me.
This didn’t change much as I got older. While I was at university I went to so many ceilidhs that to my surprise, I I began to learn steps. The encouragement of most of the boys was an added bonus. Each time I danced with on ofthem often they would slow their pace and tell me I was doing great. Meanwhile, the other girls would be spun around at breakneck speed, often hurtling to the floor, resulting in ‘Chinese burns on their arms.
Many years have passed and I have gradually forgotten the steps. Fortunately occasions when I need them are few and far between these days. I would still love to be able to dance properly. Several years ago I was at a conference where there was a teenage dance group. One of the girls was partially disabled as a consequence of physical abuse. However, she danced so fluently and with such skill that you soon forgot her disability and l was left awestruck. Her perfomace was the highlight of the day for many and left them in tears. How I longed to be able to dance like her.
This longing have never left me but surprisingly increased as the years have passed. I am comforted by the fact that one day Jesus will give me a new body. I will never feel any pain or age and will have no limitations. I cannot wait for that day when I will finally now what it feels like to be able to dance like that. I cannot wait. Of course Jesus gets the first dance!

Two stories, one theme: Disability

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Two disability stories were prominent on BBC Breafast this morning. One, concerned with the creation of disability; strokes occurring in people under 65, all because BCC’s Andrew Marr has had a stroke; and the other that there has been no noticeable take up by disabled people in Paralympic sport after the games. Neither, perhaps is a surprise. 

Discussing Disability: Strokes

Firstly, strokes in people under 65. A dear friend has recently had a stroke, and her Facebook updates continue to amaze me, make me laugh, or make me write something in empathy or encouragement. What stokes have in common with Cerebral Palsy (CP) which I have, is that both result from damage to the brain, meaning that each person is affected differently depending which part or parts of the brain are damaged. This why discerning if people are ‘disabled enough’ to claim benefits or not. It is also why it is hard to gauge how well people ‘recover’, or regain ‘normal’ functioning from strokes. If you would like to read more on why healthy people have strokes, the Beeb have written a feature about it

Disability Sport and the Paralympics: what legacy?

The second story is concerned with disability sport in this post Paralympics era, and comes as no surprise at all to me. Nine in ten clubs saw no noticeable take up in their sport after the Paralympics.The reasons for this are many  and varied. The first comes from disabled people themselves, as pointed out in the BBC’s coverage; you are half as like to participate in sport at all if you are disabled, and if you can find a club near you which can meet you access needs you still need to be able to afford to get there, and have a way of getting there in the first place. Given the squeeze on people’s finances in general, and for disabled people in particular due to benefit ‘reform’, in my opinion this will become more and more unlikely. Of course, the head honchos disagree in terms of take up of participation as Tim Hollingworth argued on BCC Breakfast this morning that due to the success of Paralympics GB’s ‘Parasport’ and specific programs designed to ‘fast-track people to elite level disability sport. He also says that there have been clubs setting up from scratch in the post popular sports such as wheelchair rugby; However, this seems to be masking the real picture. I have pointed out before how the main men are hiding under the success of the games themselves. If you’d like to hear more on legacy, here’s an audio from Discuss winner, John Harris.

At a personal level, why do I not take part in more sport?

I go horse-riding once a week at best, thanks to the generosity of a local social enterprise, and absolutely love it, even in rain or the freezing. I have blogged about the horses before. However. to go horse-riding more often, I would have to go all the way to Middleton, to specialist Riding for the Disabled provision. They have much better facilities, according to someone I met by chance at the social enterprise’s last open day. However, as I cannot afford the taxi fares to get there, and would not have the care time nor the drivers for a notability vehicle. I have no way of getting there, or support while i am there, if anything was to happen to The Bag. 

The second sport I participate in is more mainstream. I have a gym membership that I rarely use. Some of the time this is simply because there are other things to do with my time. The other reason is that I often do not have the energy and therefore need to decide when I realy am to tired and whether I could manage it if I were pushed. I am not able to manage weights machines and things like that, more along the lines of gentle exercise  sometimes swimming, using three machines in the gym, and the toning chairs. However, I am unable to get there on my own because I cannot manage my manual chair; and there are so many difficulties with transport with my electric wheelchair. I am also unable to transfer safely onto machines in the gym without help, and this is often also true for the toning chairs as well.

how long have I got?!

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Oh my goodness, today’s been one of those days where I haven’t got off my soap box. Spent lunchtime with a new friend waxing lyrical about the state of some parts of the Kirk and the Church, north and south, and how things can be a bad witness and all that… and about the different paths we’re walking and wheeling and where God is in it all, and before that I was on my soapbox about how various MPs, and job-seekers should spend a day with me or one of my wheelchair using friends, cos they’d soon realise the error of their ways, (that’s the hope/dream/delusion!!) 

I got home, and saw yesterday’s daily prompt and my first thought was, it’s one of the ‘I could write nothing, something, or Hundreds of words on!! 

Helplessness: that dull, sick feeling of not being the one at the reins. When did you last feel like that –- and what did you do about it?

The kind of helplessness I often feel is something I am kind of stuck with as in there’s nothing I can do with it, or about it, except learn to live with it and allow it to help mature me. I’m helpless without my six-month old phone, which has just died and death, and I can’t do anything about till Thursday  I was helpless last when uncomfotable with spasms and pain, and no re-positioning the bed would help, until I was so tired, I didnt hear the intercom at all this morning. Fortunately two friends were staying overnight and one of them let the carer in! I often feel helpless about my singleness, as I wrote a day or two ago. So far, I have no control over my singleness, my pain levels, my spasms, my mobile phone; I’d love to work, but don’t have a choice about that either, as I’m just too medial complicated at the moment, and off to kip as soon as this post is done. Though I may have my sixth cup of caffeine today and soldier on! 

So, as there are so many things I feel helpless over, or not it control of, when I can stay calm, how do I do it?? well, as you can see, I love to talk, verbally or in  writing, but the main thing that helps? I remember my Lord Jesus, helpless twice, once as a wee baby, and again on the cross, and all that was for me.  

I also find things to give thanks for, for there are many of those! A saviour who loves me, and who died for me in order than my sin may not be barrier, so that I might be his. A working, customised wheelchair. Healthcare free at the point of need. Food, to the point where I had to make a resolution to lose weight, my friends, and my family. I’m sure there are more. See, starting to feel better already!