The problem with being disabled

I've had CRPS over nine years now, and I've lost count of the number of battles we've had to fight during that time. Anything from getting the benefits I'm entitled to, securing ill-health retirement through to being able to take a full part in the very limited activities my condition grudgingly allows me to do. 

It's hard enough getting through each day, making the most of what seems to have become an ever decreasing quality of life. Mentally you try and stay positive, regardless of what life throws at you but there are times when it all becomes too much. I'm going through one of those phases right now. The pain and exhaustion are too much, I'm losing entire days to sleep and feeling frustrated, angry and demoralised about the situation I find myself in. On various levels. 

The problem with being disabled is that it isn't just the physical and mental effects of your condition you have to cope with. It's trying to live in a world that's set up for the able-bodied. As a wheelchair user I live in a world where there are barriers everywhere, nothing is easy and spontaneity is impossible.

Take something as simple as getting about. If we didn't have our own car, travelling anywhere would be a huge challenge, largely insurmountable. Public transport isn't an option. I can't catch a train locally as there's no wheelchair access to platforms at my local railway station. There isn't a bus stop close enough to be practical. No idea where they go either and could I access them anyway? We could use a taxi service but I dread to think how much that would cost. How many wheelchair accessible taxis are there out there? No, your own transport is essential. Particularly when you need as much help as I do.

Of course getting somewhere is just the first step. Can you actually get in? Do they have wheelchair access? Are the rooms big enough to allow a wheelchair like mine to get in and close the door? Take my dentist as an example. It's like an obstacle course trying to get into the consulting room, Eric has to manhandle me around to try and get round the tight corners. It's totally unsatisfactory to be honest and an able-bodied person wouldn't put up to with it and most likely kick up a fuss so that something is done. As a disabled person we are expected to be grateful that they attempt to accommodate us at all. God forbid we should complain. Or challenge the natural order.

The same goes for shopping. We can only go to covered shopping centres because paving slabs have a tendency to be uneven, and each bump induces more pain. This leaves us with Lakeside, which isn't the most inspiring place but at least they used to have places where you could get a coffee and a sandwich/cake and sit at a table, having rearranged the furniture so I can reach the table. Since the refurbishment there is now nowhere in the Food Court that I can can sit at easily. Fixed benches, or seating areas that are so small I couldn't get into them anyway. There's no point complaining as there's nothing they can do. We eventually ended up in Costa Coffee as that was the best solution we could find. It may seem pathetic but that's always the highlight of the trip for me, having a coffee and a cake. A treat. Is it too much to ask that we can just go and do that like everyone else? Unfortunately not...

Inevitably you end up not going out because it isn't worth the pain and payback that follows. So then it's just medical appointments that come up in your diary that give an opportunity to leave the house. At least hospitals generally have decent disabled access. Why should I have to give up on going out just because I'm in a wheelchair. I'm sure able-bodied people are thinking 'it can't be that bad, she's just making out that it's worse than it is'. I wish that were true. But other disabled users will back me up. For heaven's sake the assessments for benefits are often held in buildings with no proper access. How can that possibly be right? So you go for an assessment but then can't get in to have it. And you'll probably receive a sanction to rub salt in the wound. Madness isn't it? I face similar issues every time we try and go somewhere. 

Archery is massively important, being the only activity I can do in my wheelchair with my legs up. It is good for me both physically and mentally. I look forward to each session and have thoroughly enjoyed taking part in my first competitions indoors. I want to do more, especially as we move into the outdoor season. Of course I can't do many because I simply couldn't cope with it. The recovery time is long and the payback immense. That isn't going to stop me, but even here things aren't simple.

Bizarrely, in the archery world I'm not classed as disabled. CRPS isn't on the list of conditions they use to determine disability so classification is a non-starter. So I can't take part in disabled competitions. My only option is to shoot against able-bodied archers. No problem you'd think? I'm at a disadvantage, but at least in the rules it states that you can use a wheelchair and stay on the shooting line throughout a competition. Guess what? My wheelchair is too long so I fall outside the scope of that too. So that rules me out of shooting in many able-bodied competitions as well. 

It seems for the purposes of archery I'm too disabled to be classed as disabled. Fortunately the governing body is issuing me with a card that means I can shoot as long as the club organising the shoot can accommodate me and my chair. I'm extremely grateful that they are prepared to do this for me, but should it even be necessary? A wheelchair is a wheelchair regardless of length. A condition that renders you unable to walk more than a few feet even if supported should surely qualify you for disabled status? 

It would be so easy to give up, faced with an uphill struggle to do anything or go anywhere. A world that in many ways only pays lip service to the concept of disabled access, and equal rights for the disabled. Sadly you come across discrimination everywhere. In the most unlikely of places. All I can do is battle on, fight my corner and make the best of it.  After all giving up just isn't me is it?

Where do the chronically sick fit into the new Welfare State?

Blog time again. My topic? The much published welfare cuts. Something small eh?

Anyone who has read my blog regularly knows that I receive two benefits, namely Disability Living Allowance (DLA) and ESA, having recently been successfully migrated into the Support Group of ESA for Incapacity Benefit. For me the migration went incredibly smoothly, they took less than a month to make a decision, didn't call me for the dreaded WCA assessment with ATOS. I filled in the form, it must have gone very quickly to a decision maker and the rest as they say is history. Although it was a huge relief to be migrated so easily compared to so many others, I have to admit that it is a very sobering and upsetting realisation to have it acknowledged that I am so bad I was an automatic 'to support group'. Yes, I know I'm realistic about my situation, but the numbers of people who have got into the support group without a battle is small. Really small. And I was one of them.

I also get a paltry Teachers' Pension (on which I pay tax I hasten to add!). We don't get housing benefit, council tax or anything else. Eric gets no help from social services (we did get some money to pay for a cleaner when he broke his arm but that has stopped and didn't cover the cost anyway) despite the fact he cares for me 24/7 with no respite at all. His Carers' Allowance ended when he reached 65. Apparently you are no longer a Carer once you've retired. Of course for him nothing changed. His care for me is the same as ever.

Get to the point I hear you cry! Here goes....

I am getting more than a little sick and tired of being branded as someone who is 'a skiver', 'sees benefits as a lifestyle choice' or any of the numerous, derogatory phrases and arguments being banded around in the press and on the news. It seems that anyone on benefits is fair game, we are targetted by politicians, newspaper columnists, and numerous others. Too many to list here. Google welfare state, look at Twitter or FB, the evidence is all there to be seen. I, like every other genuinely chronically ill  person find myself being lumped in with everyone else simply because I can't work. I detest being disabled, I wish I could work. It'd be there like a shot!! It certainly isn't by choice that I live as I do!! To be blunt nobody would want to live as I do. I don't want to be dependent on benefits, I want to still be teaching, making a difference to children's lives. Not a burden on my husband, dependent on him for everything. All day, every day....

I can't dress, get up, leave the house without significant help. I can't access the kitchen, let alone cook. I live in a reclining chair with my legs up because this is the only way to make life 'easier'. I take so many powerful drugs I would be a health and safety risk. 50-60mg of Morphine are flowing round my system 24/7 and 14 plus other drugs which try to counteract the symptoms. There is no cure, I will be like this to my dying day. That's me being realistic. Something may come along that will help more but my CRPS is so entrenched that nothing will get rid of it. My Consultant has said as much. I challenge anyone to be able to concentrate for any length of time, hold down a job or simply have any quality of life living as I do. Yes I do archery and go to speedway but only because I'm a cantankerous, stubborn wotsit who doesn't care just how bad I will feel for days after. I know I shouldn't be trying to do these activities, they are way too much to cope with but I will continue one way or another. Until I really can't, which I fear inevitably will be the case.

So why am I and other genuinely chronically sick and disabled people constantly being lumped in with those who are able to go out to work but don't? Treated as second class citizens, unworthy of a place in society, let alone have a voice. 'Those who go out to work do the right thing, those who don't are doing the wrong thing' George Osborne recently said in a speech. So I'm doing the wrong thing? How insulting is that? But what recourse do I have? None. The British public agree with the changes to the welfare state we are constantly being told. 'Working people are sick of being worse off than those on benefits'. Does this mean everyone who gets benefits of one sort or another? Those on JSA? Housing Benefit? DLA?Who knows? About the only acknowledgement to those who really are too disabled to work is the rather throwaway 'we will help those with genuine need' or something similar. Can't remember the exact wording because it is always the other  comments that make the news etc.

Don't get me wrong, I want a system which encourages people to work and rewards those that do. As I've already said I would be working if it were at all possible. Please, catch the fraudulent claimants, those who screw over the system and should be working. Those who claim to be too ill to work when really they could. I don't want to be associated with them. But we are. It has also been well documented that large numbers of people have been declared fit for work or placed in the work related group when claiming ESA, only to have this overturned on appeal (approx 40%). The system isn't working but this is largely overlooked because the Government never publicises it. It instead constantly tells us what a burden those on benefits are as I discussed above. 

How on earth do you try and raise awareness about cuts that are having a devastating effect on disabled peoples' lives? For example, the bedroom tax. When you phrase it in the manner the Govt has it seems to be a no-brainer. I didn't actually know that housing benefit paid to those in private rented accommodation excluded spare bedrooms. So on the face of it that sounds fair enough. Do the same for council houses. But what happens if you have a Carer who regularly stays overnight because the the person can't be left? Or your partner and you can't sleep in the same bed because your illness or disability make it impossible? Or you have lots of medical equipment that needs to be stored somewhere as is the case with a lot of conditions. My electric wheelchair takes up loads of room. Oxygen tanks, monitoring equipment, the list goes on and on. Surely there is a case for those with 'genuine need' to be exempt from the bedroom tax? Apparently not, we are all lumped together. 

I do wonder sometimes if the politicians actually believe there are people 'with genuine need'. Those who are placed in the work related group of contribution based ESA get their benefit for a year. These are people who are believed to be able to get back to work with appropriate help. Unfortunately a significant number of people placed in this group simply won't be capable of achieving this. Once the year ends their benefit stops and, as if by magic, they are supposedly healed and now fit for work. No review, that's it. I'm not sure what they're supposed to do after that, disappear into the ether I suppose. 

I could provide so many more examples of how the welfare changes are not fair for those in society who cannot work because of illness or disability. The Govt would have us believe that their changes will make the system fairer and that it will 'always pay to work'. Spare a thought for those who will face serious hardship having no way of going out to work if their benefit were to be reduced or suddenly stop. If my benefits were stopped I could do absolutely nothing to bring income into the house. No matter how much I might want to, it would be impossible. Where would that leave us?

I shall end with this for you to ponder....

The underlying principle of the welfare state has always been that a caring society looks after those who cannot provide for themselves or acts as a safety net for those who have fallen on hard times. Does the new look welfare state really do that? What does this say about our society, is it really a caring one anymore?

When you think it can't get any worse....

Today we had the Budget. This Government claims that we're all in this together. I'm sorry but it really doesn't feel like it from where I'm sitting. My last blog post dealt with the Welfare Reform Act, and how genuinely chronically ill and disabled people are being assessed as fit for work when anyone other than ATOS and the DWP can see that it's completely impossible. Today another friend of mine had to attend an interview with the now infamous a4e. She was placed in WRAG and they have been constantly contacting her, demanding what she was doing about getting interviews, doing voluntary work. She is taking her case to tribunal, but the wheels still grind regardless. All under the constant threat of sanctions of course. She has enough to deal with just trying to live with CRPS, plus depression, migraines and anxiety without the additional stress and worry brought about by jumping through the various hoops the DWP have set in place.

As soon as they could see her, talked to her and discuss her medical problems, her interviewer was very sympathetic and made it clear that she shouldn't have been sent and should therefore appeal against being put forward for courses. Commonsense prevails you'd think. Alas no, because my friend's response was 'what is the point when it's mandatory? '. The Job Centre Advisor didn't want to send her but had to because of the rules. So instead of leaving her CV so she could presumably be placed on appropriate courses, she left the medical reports from her GP, Pain Consultant etc.

What's so frightening about all this is that you no longer seem to be treated as a human being. At best you're a scrounger, at worst you are an inconvenience to society, the taxpayer. Someone to be pushed through a system, with the ultimate goal of saving money. Reducing the numbers and hence the amout paid out.

They've already decided that some £18bn too much is being paid for Welfare. Today George Osbourne announced that another £10bn needs to be saved. It was terrifying enough before facing transition fom IB to ESA and DLA to PIP. How can you possibly believe that you will be assessed based on your medical problems and disability when the system they've set up is geared to reducing the numbers claiming and ultimately saving enormous amounts of money? Ironically the same Budget passed on tax savings in the region of £40,000 to millionaires. Oh and froze the tax allowance of people 65 and over so that they will lose money. Funny way of all being in it together?

Sure there are scroungers out there, and they need to be dealt with, got back into work. But what about people like me, who can never hope to do any sort of work ever again. People dependent on that money, and have paid NI contributions under the assumption that when we fall on hard times the State will look after us. If, and God forbid it happens, 'they' decide that I am fit for work, I simply have no idea what we will do. I have no way of replacing the money I would lose. No way of paying for anything, the house, food, fuel and everything else.

I didn't ask to become disabled, nobody does. What sort of society treats people like this?

Frightening times ahead...

Before I go on, let me make it clear that I am not left wing, right wing, or anything in between when it comes to politics. Like most people I read about what's going on, take a mild interest in the laws that are being passed. I always listen to the Budget to see how it affects us. Of course we all have opinions on whether a particular law is good or bad, but as a general rule, it doesn't have a life changing affect on your life. You get on with life as normal. The Welfare Reform Bill currently being forced through (now passed into law) by the Coalition Government completely blows that philosophy out of the water. The more I read the more shocked, appalled and saddened I become. It beggars belief that in the 21st Century some of the most vulnerable members of society, disabled people like myself, are being branded scroungers, the lowest of the low with no place in normal society. They claim we are a drain on resources, like leeches, taking money from the tax payer for no reason other than we can't be bothered to work.

Prior to developing CRPS I had spent many years working full time, paying my taxes, NI and pension contributions. Not for a second did I think I would be struck down, my life turned upside down, changed forever. I never thought I would become disabled, well you don't do you? Never in a million years did I think I would be totally reliant on someone else for everything. I can't get up without help, can't get dressed without help, can't prepare food for myself, can't bathe without help. Can't walk without help, can't leave the house without help, can't get in and out of my wheelchair without help. I could go on but you get the idea. Every facet of my life is now dependent on someone (namely my husband Eric) helping me, accompanying me and/or doing it for me. There is no spontaneity in my life. Life consists of a constant battle against everything that CRPS throws at me. I hate being disabled, no, I detest being disabled with every fibre of my being. I don't want to be and would do anything not to be.

The Coalition Government would have you believe that I am, like every other unemployed person in this country, a scrounger. Too many people are claiming sickness benefits when really they aren't disabled/ill enough to warrant it. They show examples on TV, people who claim they are unable to walk yet manage to run marathons. People getting every benefit under the sun, receiving goodness knows how much. They talk about getting those who can work, back to work. They also talk about providing more for those who have genuine need. Don't get me wrong, I totally agree with the principle of weeding out those people who are playing the system, claiming money they aren't entitled to. In fact I have more of a vested interest than most, because these people give real disabled people like me a bad name. Unfortunately the main cruz of this reform seems to be more about cutting the cost of the welfare bill by however many billions.  Given that fraud for Disability Living Allowance is just 0.5% this surely means that they are going to refuse a large number of genuine claimants using their new criteria with all the fallout that will cause?

I am currently in receipt of Incapacity Benefit and Disability Living Allowance. Both of these have been re-branded as ESA and PIP respectively. I will at some point go through the process of being transferred to these new benefits. The criteria have changed, as have the way they are assessed.  As I said at the start the more I have read about the Welfare Refom Bill, the more concerned I have become. The adage 'scrounger until proven otherwise' seems to be the standard, whilst the process seems geared up to reject people, who are then faced with trying to appeal.

Incapacity benefit is just that, you either qualify for it or you don't. Simple. ESA has two levels, the 'support' group, which I guess is a direct swap for IB. Here you are declared unfit for work and get the higher level of money you can get. Incidentally it's less than you get on IB but that's to be expected. After all this is a money saving exercise. To get IB you had to get 15 points based on how well or not you could carry out various tasks. In other words I filled in a form, sent it off and waited for a decision. The first time round I had a medical as well. When it was due for reassessment I filled in another form, but wasn't called for a medical. I presume this was because the Doctor I saw said that he would state that I shouldn't be called back for a medical because it was inappropriate. Too much of an ordeal. I have looked at the criteria for ESA and I should comfortably get sufficient points to be placed in the Support Group. Nothing to worry about then, simple switchover? The reality seems to be very different, the more I read and talk to other disabled people on Twitter.

There is a second group of ESA, known as the WRAG. It stands for Work Related Activity Group or something like that. If you don't get enough points to go into the Support Group you get dumped into this one. There is also a cutoff below which you don't get ESA at all. In which case you are deemed to be immediately fit for work and have to sign on. The Govt would have you belief that the WRAG group is a really supportive initiative. They will help people who could work, if given sufficient support, back to work. A noble idea surely? Sadly not. Terminally ill people who have more than six months to live are placed in this group. People undergoing chemotherapy and other treatments for cancer are placed in this group. People with progressive and chronic conditions such as mine are put in this group. People with severe mental health problems are placed in this group. We are talking about large numbers of people, like me, who struggle to live, let alone work. Not scroungers, hypochondriacs, those who can't be bothered etc.

Let me give you an example. One of the good friends I have made on Twitter is currently seeing the full horror of this new Act. For obvious reasons I will not divulge personal or extensive details about her condition. Her case though shows everything that is wrong about the WRAG of ESA and the Welfare Reform Act in general. It also shows why there are terrifying times ahead for me and every other genuinely chronically disabled person. A combination of severe psoriasis and psoriatic arthritis (affecting 95% of her joints) has reduced her to being dependent on her husband for 24/7 care. Virtually housebound, her mobility, like mine is totally compromised so she relies on a wheelchair when walking is required. Her hands and feet are particularly badly affected. In other words living day to day is not only a huge challenge but a very painful one. She was working up until she became ill, is a Doctor of Psychology, and had paid all her contributions. ATOS, the new company brought in to carry out asessments for ESA and PIP stated on her report that her condition is progressive and she will never return to work. It would seem a no-brainer that she be put in the Support Group. But no, the DWP put her in WRAG. How can this happen? What happened to the 'we will provide more for those in genuine need' rhetoric? The mind boggles how they define genuine need if she doesn't qualify. She was also told not to bother appealing as it would make no difference.

To cap it all, she was contacted by the DWP a couple of days ago to be told that having been in the WRAG group for the maximum time allowed, her money will stop at the end of April. Miraculously cured and fit for work because the time limit has been reached, nothing to do with her health and completely ignoring the fact that she is now less able to work than she was when it was first awarded. What exactly is she supposed to do now? Reapply? Sign on for Jobseekers' Allowance? Or just do nothing and lose her only source of income? I could talk about PIP, the replacement for Disability Living Allowance but the same horror stories abound, with people being turned down when it is blatantly obvious that they should receive the benefit or at a higher level.  What civilised society treats people like this?

With me facing transfer onto both ESA and PIP at some point, do you now see why I find the future so terrifying?