Nothing to get up for?

As I have previously indicated on this blog, after 14 years of progressive illness and disability, I had to finally give up my career almost 3 years ago. I regard it as one of the hardest things I have ever done and, to be honest, something I am still coming to terms with.

Society has a very poor view of benefit claimants. Admittedly when any individual person sees or hears about me and my story, they always say "oh, we don't mean people like you". But it still grates and makes me feel angry or inexplicably guilty to see headlines about benefit scroungers, or 75% of disabled people really being fit for work (retractions later made), or 1 million disabled people dropping their claims through fear of assessment (claim later officially reprimanded by the office of statistics).
You only have to look at this recent tirade from an MP about badger protesters to see the sort of contempt and prejudice we may face.

I thought most of them were in the habit of lying in bed until the pubs open, or until the postman arrives with the benefit cheque (or do such things get paid straight into their accounts these days?)
Either way, since they are all malingerers and scroungers there is no real incentive to leap out of bed as soon as the dawn chorus strikes up.

Even if you ignore these false statistics and prejudice, the press and government is full of language such as people "festering" or "abandoned on benefits", being "written off" and people needing a "purpose".

So where does that leave someone like me, who already can't work and can only expect to get sicker health wise and more "disabled" as it is understood in general language.

Am I festering? Is my life now meaningless? Do I have nothing to get up for?

My response is no and I resent the implication that I stay in bed all day out of laziness or that going to the pub is my only goal in life.

After all, do working people only get out of bed on work days? Do they stay in bed all day during holidays and weekends, unable to find the will to get up because they don't have to go to work?
Do pensioners suddenly stop living when they reach retirement? Do we likewise consider that they also "fester"?

I'm not saying there isn't some readjustment. Work is a huge part of your life and losing it leaves a great big gaping hole, even more so if it is a "career" rather than a "job".
When you lose it due to illness, then you are obviously also having to deal with serious ill health at the same time. This readjustment does take some time, both physically and emotionally.

However being unable to work need not prevent you from finding things to do within your capabilities and which are worth getting up for. These new hobbies or activities may be a very long way off employability and may even seem "low level" or "small" compared to what you used to do (most of mine are done from bed!), but they can still be enjoyable and fulfilling nonetheless.
Some may simply provide personal enjoyment, but others may have a wider impact and contribute in a positive way to society.
For instance for a while I helped out on an online support group for people newly diagnosed with lupus, as this was something I could still do while bedbound.

Most of all it doesn't stop you being a valued human being to your friends and family. Maintaining these relationships is both vital and rewarding. It can also be difficult and challenging if you are very ill. Remaining (or becoming) a dependable and valuable parent/daughter/son/sibling/aunt/uncle or friend/godparent can be very large goals in themselves.
For example personally I am mostly housebound and bedbound (a situation I've improved by replacing my sofa with a daybed). I therefore invite my friends family to visit me instead rather than me go to them. Luckily they are able to do so very often and on a regular basis.
The main issue is that these visits are extremely tiring for me, and usually even physically painful. So they are something I prepare for and time carefully. The rewards though are indisputable, not just for me but for my friends and family. It is without doubt, as it should be, a two way gain.

In summary, while I may mostly be housebound and miss both my work and all the other more active hobbies I used to do such as sport and music, my day is still full of things to do as and when my health permits, however "small" they may be (just intermittently writing this blog when well enough is one of them). Some of these things simply bring personal satisfaction, while others I hope are having a positive impact on other people's lives, be it my friends and family or further afield.

A life can be good, fulfilling, rewarding and worthwhile without paid work if absolutely necessary. While I agree people should work to support themselves financially if they can, to keep implying that those who can't sit sadly around all day, contribute nothing and are worthless is both insulting and untrue.

If you can, can't you just...

David Cameron gave a speech recently at the Disability Employment Conference, which marked the launch of the government's "Disability Confident" initiative.

I found one paragraph extremely telling. Many will probably see nothing wrong with it and perhaps even find it "inspiring". To me it explains a lot not only about current government welfare policies but wider social views surrounding sick or disabled people who cannot work.

Here it is:

Now that was a message pioneered by Chickenshed, who are performing for us today, as they did on their first occasion nearly 40 years ago. They tell us that there’s a saying in Africa that if you can walk, you can dance, and if you can talk, you can sing. But Chickenshed say even if you cannot walk, you can dance; and even if you cannot talk, you can sing.

As was pointed out to me in the comment below, one way of interpreting this is that people can and should be encouraged to do things differently. The end result is what is important. This is true and certainly something I did while working myself, often having pro-actively to demonstrate it was possible to my employer. However in my experience many are more likely to go for the original African saying and believe that walking means you can dance, talking means you can sing.

I do understand this to a point. I am rather unique in that I have encountered many facets of disability and illness. I did go through a period of remission and during that time I had to relearn to walk. So I have experienced rehabilitation as well as experiencing other sides such as sudden onset of disability from one day to the next followed by a progressive illness leading to gradual deterioration, slowly losing more and more abilities.
When you are getting better and doing something like relearning to walk, the above attitude does pay off. I remember that each day I would walk a little further. One day I would walk to the garden gate. I would tell myself that if I could do that then the next day I could get to the post box a little bit down the road. And I did. And so on. But the same does not apply to a stable or deteriorating illness or disability if you have already pushed yourself to your limits.

It is an attitude encountered again and again, particularly online when people declare that everyone is able to work. I have written about this before "If you can type, you can work". There are many variations on this, some more extreme than others. "If you can use twitter, you can work". "If you can go shopping, you can work". "If you can use a computer, you can work". "If you can write a blog, you can work".

The thinking behind this is exactly the same as that announced by the Prime Minister, but is fatally flawed.
Someone who is just about able to walk with great difficulty and pain may not be able to dance.
Someone who is barely able to talk may not be able to sing.
People take the ability to do one small thing as proof of ability to do something a little bit more challenging. For a healthy non disabled person the difference between the two things may seem so small as to be meaningless. For a disabled or sick person the difference may as well be a mountain.

Let's take a concrete example.
I use an electric wheelchair. My arms are as messed up as my legs and I can only walk a few steps. But following this logic:
If I can walk a few steps, I can walk across the room.
If I can walk across the room surely I can walk just a few more steps to move from room to room around the house.
If I can walk around the house surely I can walk just a bit more to walk up the garden path.
If I can walk up the garden path surely I can walk to the road.
If I can walk to the road surely I can walk just a bit further to the end of the street.
If I can walk to the end of the street surely I can walk just a little bit more to the post office.
So in fact I'm a complete fraud for using a wheelchair, right? Right?

The stupidity of this logic is very easy to see when we talk about something obvious like mobility and wheelchairs. But exactly the same process applies when comparing using a computer, twitter, occasional blogging, perhaps doing a shop once a week and being able to hold down a regular job. If those activities are already the absolute limit of the sick person's ability, then no, they can't "just" do a bit more and do enough to do a job.

This same reasoning is also found in "testing" for disability benefits. Being asked if you watch TV can be taken as proof that you can sit up and concentrate. In my case I have a daybed, watch TV lying down and usually don't get to the end of a program but have to have a break and watch it later. So it would be wrong to do so.
As another example I am currently writing this blog post lying down flat on my back and it has taken me several attempts and rests. Now that is ok. I have come to terms with this and I will not let it stop me from writing it. However the finished product should not be taken as proof that I can sit at a desk and concentrate for a long enough period to write articles like this one.

Testing whether people can work or not should be extremely careful not to make those mistakes. In fact in my opinion ideally the whole process should not be a black and white medical functional test at all but a sliding scale allowing people to do what they can with the best support (and make sure they get it). It shouldn't matter whether that be nothing, 1 hour a week, 10 or 30 and voluntary work should be an acceptable solution, particularly for those whose conditions mean they cannot be reliable. Unfortunately all governments have been implacably opposed to anything resembling a real life test and so this is likely to remain wishful thinking.

The Autumn Statement and Disability Benefits

You might quite understandably be mistaken in thinking that disabled people came out quite safe and sound from this year's autumn statement. After all our chancellor announced that although restrictions were going to have to be made to most welfare benefits, disabled people and carers would be supported and disability/carer benefits would not be affected.

The problem is that in the next breath he announced that, along with most other working age benefits, ESA would be included in the restriction to a 1% annual growth for the next 3 years. Well below the rate of inflation this amounts to a cut in real terms.

ESA is mostly paid to disabled people who are too sick to work. To qualify for this benefit they have to have undergone rigorous testing and passed the much maligned WCA (Work Capability Assessment) administered by ATOS and been classed as unfit for work. Some are considered to be able to work again at some time in the future (possibly years). These are put in the WRAG (Work Related Activity Group). Others are considered too ill or disabled ever to work again and are put in the Support Group.

So how can the chancellor be promising disability benefits be exempt when ESA is included in the cuts?

Well turning to the small print of the Treasury Costings (p33) we see the following:

“The following benefits, tax credits and payments will be up-rated by 1 per cent for 3 years from 2013-14:
• The main elements of Jobseeker’s Allowance, Employment and Support Allowance (ESA), Income Support, applicable amounts for Housing Benefit;
It will not apply to the premia within these benefits relating to disability, pensioners, and caring responsibilities, the support group component of ESA, or the disability elements in tax credits, which will be uprated as usual.”

A claim for ESA comprises:

• A main element of ESA (the bulk of the benefit)
• A Support Group component or WRAG component (Anyone unfit for work gets one of these after passing the WCA)
• Any relevant disability premiums (not everyone qualifies for these)

So what does this mean?

For both WRAG and Support group claimants the main element part will only rise by 1%.
For WRAG claimants the WRAG component will only rise by 1%
For Support Group claimants the Support component will rise by inflation.
For both WRAG and Support Group claimants any disability premiums will rise by inflation.

IN SUMMARY:

• WRAG claimants who do not receive disability premiums will see their benefit restricted to 1% growth for 3 years.
• All Support Group claimants and those WRAG claimants who receive disability premiums will see their benefit restricted to a growth slightly higher than 1% but still significantly lower than inflation. In fact it works out at approximately 1.4% according to DRUK.

ESA claimants are seriously ill and disabled people who have fairly and genuinely been found unfit for work. The statement that disabled people will be supported and disability benefits will be unaffected is totally and unequivocally untrue. It is high time that someone stood up and said so.

Please don't come in

EDIT: August 27th 2013.
Jamie Oliver has today launched into a tirade against "poor" families with large TVs. This sadly once again makes this post relevant.

_________________

I hate strangers coming into my flat.

I live in a fairly roomy ground floor 2 bedroom flat. It took me quite a long time to find as I needed somewhere which was wheelchair friendly and large enough for me to get around in.
At the time I was still working and so I wanted it to be close enough for me to get to the office in my wheelchair as public transport would have been a disaster!

I have now lived here for about 8 years. My landlord is a good one and the property is kept in extremely good condition and has been repainted twice since I moved in. I am extremely lucky as the rent was very low from the outset and hasn't gone up much over the years. My neighbours above me pay around £100 more per month for exactly the same flat. (I'm hoping my landlord doesn't find out!).
After 2 years (bureaucracy!) the flat was finally adapted to be almost fully wheelchair accessible (rather than simply wheelchair friendly) with, for instance, a nice level entrance instead of bumping myself at speed up a step with a kerb climber!
Although semi-furnished, while I was working I bought some reasonably nice furniture as well as some luxuries such as my tropical fish tanks, a nice big TV, a games console, a big laptop and a blu-ray player (I'm a bit of a techno-geek!).

I was lucky that I had a well paid job so I was also able to put a bit of money aside during those years so that should any of these things break down, or should I need to replace more essential things like my electric wheelchair, I should be able to do so at least once.
I am also in the very lucky position that other essential items such as cookers, washing machines, boilers etc are the landlord's responsibility, not mine.
The flat is kept clean and (sort of) tidyish thanks to the help of my carers I employ through the direct payments scheme through social services (although I would note that I have to contribute 100% of my so called "disposable income" from my benefits towards my care, which comes out of my DLA care component and ESA disability premiums).

However my illness continued to progress and my disabilities worsen. I eventually had to give up my career 2 years ago and go on benefits. My low rent really came in useful here as it meant that my property still came below the upper limit for LHA (replacement of housing benefit) even with recent changes. (Had I been living in my upstairs neighbours' flat, I would have had to move as LHA would not cover their rent).

But this is where things all start to go a bit pear shaped.
Newcomers to my flat are not at all impressed.
It is far too "nice" for someone on benefits, even disability benefits.
They are perhaps unaware that it is the landlord, not myself who pays for the decorating of my flat.
It perhaps doesn't occur to them that I NEED more floor space and that my electric wheelchair cannot negotiate most properties. Furthermore if I DID move social services would have to pay out to readapt whatever property I moved into with new ramps etc...
They certainly don't know how much my rent is, nor that for whatever reason it is very low and I am simply very lucky.
It doesn't matter, nor would it probably occur to them that not one of the expensive items here were bought with benefit money and that I would NOT be able to buy these things today or if I had been on benefits all my life.**
In fact it usually does not occur to them that I may not have been on benefits all my life but worked until just 2 years ago. Total shock and surprise normally greets the "revelation" that I used to have a "proper" job.

I very unusually had to use an agency carer today I had never had before. She said "what a nice flat" I had. After looking around she pointed out that although I was sick "I had a lot of expensive things around me". She then asked if I was on benefits and added she "assumed I don't work?..."

THAT is why I hate new people coming to my flat. I am now ashamed and feel the need to justify having the things I do, even those I worked hard to get and bought with my own wages.

This particular carer was perhaps out of line, but isn't she just saying what many people think but just don't say?

It keeps me wondering what people are saying behind my back.
Paranoid? Maybe. Realist? Probably.


**Not that I think people who have always been on benefits should not be allowed to budget and save up for something nice, but in my case I would certainly have budgeted very differently and probably bought slightly different items on the income I am on today.