Breaking Promises

Yesterday saw the second major day of protests by disabled people in the Hardest Hit campaign, following the first organised last May. Disabled people from around the country and from almost all disability groups met at 14 places to make their voices heard. It is almost unheard of for so many disability organisations to unite so unanimously in this way. Indeed it is jokingly said that the only achievement of Maria Miller, minister for disabled people, has been to unite disabled people and organisations in a way that has never been seen before.

Although the number of people marching may appear small when compared to other demonstrations such as those against tuition fees, it must be remembered that for every person marching there are hundreds unable to, either because they are too ill or perhaps because of accessibility issues. I am one of them. Many disabled people are invisible and the general public and indeed the government must be reminded of this. These protests show just how bad these benefit reforms are and how scared disabled people are.

But although there was some small media coverage, most of the attention was directed elsewhere. Worse, promised interviews were cancelled at the last minute. Sue Marsh, a now well known disability activist, due to appear on Radio 5 had her show cancelled. I myself had my own telephone interview stopped.

When a single benefit cheat is discovered the media fall over themselves to splash it over the front pages. When thousands of scared disabled people take to the streets telling their stories of a broken and faceless system which is set to get even worse, there is barely a mention of it.

As an example, the Sunday Mail got into trouble for falsely claiming that thousands of children with ADHD, which they called "naughty child syndrom" got free cars though the motability system. Although they printed a correction, it is that headline which will be remembered.
Worse, they may have played a role in the change to motability rules which will have a huge negative impact on thousands of disabled people. This is what they reported on instead of the disability marches yesterday. Furthermore they referred back to their original ADHD claims without mentioning that they had been false.

The media continually prints that the government says their only goal is to make sure that the money goes to those who need it most. The fact that they are making a 20% cost cut or the fact that  people like myself, who receive the highest disability awards and are in the government's own words "the most vulnerable", face a £30 per week cut, 20% of my income, is never mentioned.

The government has much to answer for. They broke and are breaking the promises they made to protect disabled people. But the media also has much to answer for. They shape public opinion. They are the ones who control what the general public knows. What is the point of disabled people knowing the truth if it is impossible to let everyone else know? The media has a duty to inform. They are failing in that duty.

Hard hats needed

Although I value my independence and would not live my life any other way, there are times I feel a little lonely with just my fish for company. Ideally I would like a dog but that is impossible for both practical and tenancy reasons.

I have however returned to childhood and bought myself a little hamster. Well, I say little... As far as hamsters go, he is an enormous fat fluffball. But don't tell him I said that.
Hmmmm.  I should probably also keep it a secret from ATOS, the medical company who determine if you're fit to work, who reputedly think that if you have pets you are fit to work. (It really is a question they are told to ask claimants!)

Yesterday saw me engaged in an epic battle of wills with Chewbacca (Chewy for short), who suddenly decided that sleeping in the comfortable snug house at the bottom in the cage was a bad idea and he would instead make his bed inside the plastic tunnels meant for exercising.
Ignoring the laws of gravity, he carefully carried his food and bedding all the way to the tunnel and left them there to go and fetch more, whereupon they promptly fell out. I would gather them up and put them back in his bed, but to no avail.
He eventually fell asleep in the tunnel, falling out onto his head half way through the evening. I'm still wondering whether this will knock some sense into him or cause irreparable brain damage.

Throughout this frustrating battle I couldn't help but be reminded of how I feel at the moment with the government. Take something that works and stubbornly try something different which quite obviously will not.  We fight against it with all our might, knowing that if we don't something bad will happen.  Right now I'm just waiting for the government to fall out of their own tunnel onto their heads.

The only difference is that in Chewy's case the only person hurt was a little (ok, fat and fluffy) hamster. With the government it will be thousands of disabled people. Maybe we all need to be issued with hard hats.

I'll say I'm sorry... but that man still should have been working you know...

This week saw the Labour conference completely ignore any disability linked issues by deleting them from the agenda.

Luckily the leaders were not going to quite get off scott free and Kaliya Franklin and Sue Marsh were there to try to get the opposition to, well, oppose some of the harshest cuts and changes to hit disabled people in recent history.

Kaliya finally got a chance to question Ed Miliband 

"Evidence is overwhelmingly pointed to sick and disabled people being the hardest hit by the cuts, but this issue has been airbrushed almost entirely from conference. Are you reluctant to use the word disabled because the public has been so effectively convinced that we’re all scroungers and that the Labour party are not willing to challenge that stereotype on our behalf?"

She did manage to get an "almost apology" out of him:

"I take your point that I didn’t say in the speech yesterday, and I should have said it, fair point, that you’ve got to defend people who are with disability, ill health, and say that they shouldn’t be under attack"

However he still shows himself to lack understanding and show the same prejudice which permeates the whole system we currently have.

A few months back Ed Miliband made a speech which started off by saying he'd met a man on incapacity benefit and thought he could work even though his disability was genuine.

When Kaliya challenged him on this, rather than see how much harm this could cause disabled people, he defended himself as follows:

"my impression which is that he was somebody who had lost his job, I think ten years ago, right (...) the system didn’t sort of demand that he go back to work, the system sort of wrote him off"

"And the problem is, I met his next door neighbours, and they, genuinely, this is a story, I met his next door neighbours and they didn’t actually refer to him but they said ‘look, our problem is we’re working incredibly hard and we’re worried for we’re paying for people who can’t work"

In other words, with no medical information, no background, nothing except his own impression the the man "looked ok" and had been on benefits for a long time, Ed decided that he should be working. 

In particular he was encouraged by the fact that this disabled man had neighbours who resented the fact that he wasn't working.

This disabled man could have had any number of illnesses. Not everything is visible to the naked eye. Many serious and debilitating conditions do not show on the surface: lupus, MS, severe epilepsy, various neurological conditions, not to mention mental health illnesses.

His neighbours might not necessarily be aware of this man's medical conditions. They could simply have been jumping to conclusions and jealous. At worse they could have been disablist.

But Ed did not consider any of these things. The man looked ok and had been on benefits for 10 years. His neighbours were "hard working" and didn't want to pay for people who didn't work. Their word trumped his. They were believed and listened to. The disabled man was not. It was assumed he could and should be working as he had been on benefits for so long.

This in particular is something that people don't seem to understand. Some illnesses and disabilities are long term. That is what treatable but incurable means. You won't die, but you won't get better either. You will be just as sick 10 years on as you were the first year. And you will be just as incapable of work and just as much in need of benefits.

Sadly though it is this way of thinking that has brought us to where we are today.

If you look ok, then you probably are ok.

If you look ok and are on benefits then you are either lazy or are fraudulent. Tougher tests will help this.

Some people have been on benefits for a long time. This is because they have been "abandoned" on them but with help they would work. 

To stop this the new system will demand that they work and benefits will be time limited. 

People will have to work for their benefits, undertaking certain tasks, even those deemed as unfit for work, or face sanctions (removal of benefits for a time).

All of this completely ignores the reality of illness and disability. The people this will hit are not the very small number of fraudsters (0.5% of claims) who will be able to jump through any hoops thrown at them. Quite the opposite they will hit and harm the very disabled people these benefits are there to look after.

New assessments are rigid and very much like Ed do not take into account medical history but just look at a claimant on a certain day and see if they look ok and can do a few easy tasks which bear no resemblance to what is required to do a job week in week out. The system has been found unfit for purpose by every single inquiry into it.

By time limiting disability benefits very disabled people will suddenly lose their benefits through no fault of their own apart from being sick or disabled for "too long".

Sick and disabled people will find themselves sanctioned and lose their benefits when they are unable to do the tasks set for them by non disabled people unaware and completely out of touch with the realities of living with disability. Already people have lost their benefits for not attending an appointment with their Jobcentre advisor when they were too ill to attend. Remember that these are sick people classed as unfit to work.

Ed, sometimes what you see is not what you get. You offered to meet Kaliya and discuss this further. Please do. And please listen. Disabled people are getting desperate.

The accessible corner shop... or is it?

Yesterday saw me in a slight panic as I realised I had no birthday cake for my friend's birthday party today. I then remembered that I am feeling slightly better at the moment and am not housebound (this is still a constant happy surprise to me!). My trips out have to be short and I pay for them with a lot of pain and going back to bed (at such times I really love my duvet and heated mattress), but nonetheless it is wonderful to get some fresh air and enjoy the freedom of the outdoor world if only for a little while.

Only having an hour before my evening carer arrived I jumped into my outdoor electric wheelchair and hared off down the road. I arrived at the first corner shop. I hadn't intended going in there as it had never been accessible. To my surprise they had installed a big automatic wheelchair accessible door. Greatly encouraged by this, I decided to give it a go.

The door itself worked perfectly and I found myself inside. So technically, yes, the shop is accessible. I CAN get inside. After that I can wistfully gaze down some narrow aisles before performing a 20 point turn and leaving again.

Ah well. The slightly bigger shop further down the street was nicely accessible with wide enough aisles, and armed with a cholesterol-ridden, heart-attack-in-a-box chocolate cake, I returned home.

When a life is worth less

A man admits to smothering his wife with a pillow. What happens?
He is admittedly suffering from depression. But if the wife is fit and healthy, that would never be deemed an excuse and it is hard to imagine that he would walk free.
But if the wife is suffering from a progressive and terminal illness, then it is a different story.  Stuart Mungall walked free after claiming it was a mercy killing.

But here is the catch. The day before she was killed, the wife had told a nurse that she was "taking it in her stride". At no point had she indicated that she wanted to end her life. Stuart himself does not claim that she told him to do it. He simply says that he "saw it in her eyes".

At a time when many people are pushing for a change in the law to allow assisted dying, with one option being decisions rendered by the courts, is it any wonder that many disabled people are scared and worried? Warnings of a "slippery slope" are often dismissed as scaremongering. But how can they be when already today disabled people do not receive justice in the courts? As seen here their killers are sympathised with and let off the hook. The mere fact that she was facing a difficult illness and that he was struggling to care for her was enough for him to walk free.

If caring for his wife was so hard then more help should have been given. She should never have been left at the mercy of a man who either put his own wants and needs above hers and took her life for his own convenience or whose mental health was so impaired that her safety was at risk. The fact that this has now been tacitly legalised by the court is deeply disturbing.

The truth is that her life was regarded as less valuable than that of a non disabled person. Otherwise he would have received the same sentence as someone murdering their non disabled spouse. Depression would not normally excuse murder.

The judge praised Stuart's love and devotion in caring for his wife during her "difficult" illness. Astonishingly this appeared to therefore logically imply that he had been acting in his wife's best interests out of love, ignoring the fact that she evidently still enjoyed her life. However a mercy killing is only a mercy killing if the person dying has expressed a wish to die. It is not up to the family or others, including doctors or the courts to decide when a life is worth living. It is up to the person living it.

With assisted dying once again on the table and in view of this sort of case, can we really trust the courts to tell the difference and ensure no one is ever coerced or guilt ridden into this decision?
Will they really make sure the disabled person has received all possible support, including mental health intervention and independent social care to ensure the best possible life?
Will they even be able to recognise the worth and quality of life of a disabled person with very restrictive impairments?
Will they make sure the disabled person is not directly or indirectly being adversely influenced by their loved ones?
Or will their own biased views of what is an acceptable quality of life and an emotional view of the "sacrifice" of families and carers inevitably colour any judgment they might render?

Paperwork Madness

Managing my paperwork has become more and more of a headache as my illness has advanced.

Some tips have helped. Precarious tottering mountains of paper were moved into folders. Creaking unliftable folders were later sorted and emptied into a lightweight filing type cabinet. However I still struggle to keep up with the unending weekly post and letters can be found dotted around my flat in the most unlikely of places.

After 2 years of asking for help and several threatening letters from social services wondering why I wasn't dutifully sending in my records and receipts for my direct payments, I was reassigned a social worker.

This led to a reassessment which took several 2 hour long sessions after which it was agreed that I did indeed need an hour of help a week for paperwork, to be added to my direct payments. I was informed that I would have to undergo the same reassessment 3 months later to check that everything was "ok" and I was using the hour for paperwork. (Drat. There goes my plan for weekly skydiving).

This had to be written up as a report and presented to a panel for approval. Unfortunately it was turned down by the council who insists that I MUST use an agency chosen by them. And I am only allowed an hour a week for a month and half an hour after that. So much for disabled people having choice over their lives.

Not only this, but because of this "increase in care" I must now have a financial reassessment. They will kindly send me a list of all the paperwork I will require at the meeting...

This leaves me in a bit of a dilemma. I am not physically able to prepare this paperwork myself. But with the limited hours they have allocated me, I do not have the spare time to ask my newly allocated helper from the agency to help me either. We are currently ploughing through a backlog of paperwork and sorting out my filing cabinet, before scouring the flat for all the letters currently hiding and giggling from under various pieces of furniture.

In other words they are asking me to produce the paperwork myself so that I can have someone to help me with paperwork...

On a separate note I am appalled by the cost of all this. The amount of extra care I will receive totals 28 hours per YEAR. I will be expected to contribute a third of the cost under the "fairer charging scheme" which laughably charges people on benefits but not people who work (a subject for another time perhaps). So the yearly cost to the council will be around £170.

How much more have all these assessments cost? And that's not counting the exhaustion and inconvenience caused to myself. All this for half an hour help with my paperwork.

P.S. My "paperwork helper" was just here. I asked her if we would be ready for a financial assessment in 2 weeks time. She laughed.

Your year is up! Get thee on your wheelchair and find a job!

I wrote to my MP recently regarding time limiting of ESA. I am totally disgusted by the reply forwarded to me from Minister for Welfare Reform Lord Freud. But I will concentrate on just two paragraphs.

Currently people can qualify for many years of benefit on the basis of NI contributions made over a relatively short period of time. This is no longer acceptable in the current fiscal climate were we need to review the balance between contributions paid and indefinite entitlement to support.

So there we have it black on white. The principle on which the welfare system was founded “To each according to his ability, to each according to his need” is to be abandoned. Woe betide you if you have not paid much NI. More worryingly, following this logic, contributions based benefits could well be under further threat down the road.

And the reason behind this? “The current fiscal climate”. In other words, disabled people are to bear the penalty for errors in judgment made at the highest levels and which have destabilised our economy. In a civilised society are these really the people who should be bearing this burden?

It is very tempting to follow Freud’s reasoning and blame the benefit recipient for “taking more than they put in”. But it is my experience and observation that when it comes to illness and disability the total amount of NI you pay is simply pure dumb luck and has little to do with willingness to work or any other factor.

I will take myself as a prime example. I did pay NI for a period of 5 years. After this time my illness had progressed to such an extent that I had to give up work. After taking the dreaded WCA I was put into the support group of ESA (ie I am never expected to be able to work again and have unconditional support). But my illness could well have started 5 years earlier. In that case, with the best will in the world I would never have paid any NI at all. Conversely, it might have started 10 years later. In that case I would have paid 15 years NI instead of 5. In either situation I would have been no more or less “brave”, stronger or lesser willed or more or less eager to work. It would simply have been down to luck of the draw.

We do not think it right in principle that those who are assessed as able to undertake work related activity should be able to remain on contribution based ESA for an unlimited period. We have therefore decided to introduce a 1 year time limit (…).

This argument simply takes my breath away. ESA is an out of work benefit. Those in the WRAG (Work Related Activity Group) who are talked about here are those who are expected to be able to work again one day with the right support. That support takes the form of work related activity. Being able to do work related activity (which might be something like doing a few hours a week volunteer work, or a training course) is nothing like being able to hold down a job week in week out for 35 hours a week. So taking away the benefit and at the same time the very support which goes with it is both unfair and short sighted although admittedly lucrative for the government since it will save £30 per week. And let us not forget that these people have passed the stringent WCA and remain UNFIT FOR WORK!

Time limiting it to one year is saying that ANY illness or disability must be treatable or curable within one year. This is simply laughable. This policy is going to hit many very sick people including people with MS, recovering cancer patients and people with long term chronic illnesses. The issue has already been raised at prime ministers questions but Mr Cameron has been remarkably evasive as to how many people will be adversely affected. In fact, he seemed unaware of the difference between the categories of ESA.

I will be writing back to my MP and I urge all of you who can to do the same and to raise awareness of this issue. Although ESA will still be available on an income basis, the threshold will be so low that disabled people are about to become a financial burden on their loved ones, creating a very unequal relationship. I myself have already worked out that it would be financially unviable to get married!

Just remember, don’t get sick. If you do, you have a year before you have to get on your wheelchair and find a job!