Monday, 4 November 2013

The Understanding of a 5 Year Old

My god daughter is currently 5 years old and could teach people a thing or two.

Last week was half term and I was able to see her. She has from an early age understood that unlike other adults "Sarah" cannot get down on the floor to play, run around and chase her, or throw her into the air.

This has never been a problem. My daybed has been the scene of many happy hours of play, a big favourite being "the teddy bear game" which has evolved from 2 teddies simply saying hello to one another and having hugs (age 2), to them calling the builder to repair holes in the roof (age 3), to travelling to Egypt and avoiding crocodiles (age 4). Her imagination has certainly always been a joy to play with!

Last week she very randomly decided to pretend to be my hamster "Dash" who had escaped from his cage and wouldn't go back. I had to catch her. Obviously this presented a slight problem as I was lying flat on my back on the bed.

It turned out that in actual fact, it was no problem at all.
"You're chasing me and running really fast" she informed me breathlessly as she raced round the room.
"Oh ok" I said, reaching out with both arms,
"You'd better look out. I'm just behind you", I added.
With a squeal of delight she looked over her shoulder at me and doubled her speed, giggling.
"You missed me. I'm running REALLY fast", she told me.
"Oh no" I said, putting my arms down and pretending to get out of breath.
"We both have a rest and then start running again" she said.

And so it went on. Quite incredibly we had a chasing game, something I never thought possible!

In my god daughter's mind my disability is no big deal. It is accepted as a fact of life. She doesn't blame me for it, get upset with me about it or ask me to change. If it is in the way, then we both together find a way around it.

If only other people were so accepting and willing to compromise about disability in this way.

Tuesday, 15 October 2013

Epilepsy Confusion


I don't normally write personal posts on this blog. Today quite unusually I want to share something I wrote for friends and family.  For those who harp on about how if you can type you can work, maybe this should give you an idea of why some of us can't. Readers of my blog will have noticed that my writing activity is erratic to say the least. This is also why.

Epilepsy is only one of my many difficulties. It isn't fully controlled, is unpredictable and every so often results in mild ongoing confusion. While I write about it in a lighthearted way, I don't think an employer would see it as such. 

______________

I'm back! After a week of seizures and luckily being rescued and looked after by "Supermum", followed by strict resting, I'm starting to feel a bit more like myself again.

This is how it all started:

I phoned Mum to warn her I had suddenly started having seizures and might need her to come down (Social Services Care Package not able to be set up for unpredictable events like this!). We finally decided I was ok to spend the night alone and she might come down the next day if seizures continued.

At 10pm I realised that if I had a lot of seizures in the night I might be confused in the morning. I had the sensible idea to leave notes for my morning carers with clear instructions on who to call if that happened.

I then hit a major snag. I suddenly realised my carers were French and wouldn't understand if I wrote the notes in English!
I then remembered I was bilingual and could write in French. Phew! Disaster averted.
Oh no. Wait a sec. My carers weren't French, they were definitely German. And although I had learned German at school, for some strange reason I couldn't for the life of me remember it right then.
Aha! I then had a cunning plan. I would use an English-German dictionary.
Oh no. Wait. I didn't own an English-German dictionary. Curses!
Aha! Cunning plan B. I would go online and use Google and find a translation program.

Just then a niggling thought which had been bugging me finally thrust its way through my cunning plans and into my mind.
If my carers only spoke German and I couldn't remember how to speak German... How had we been communicating for the past few years??!
It then slowly dawned on me that they were in fact British, had always been British and always spoken English.

I sheepishly phoned "Supermum" and told her I might be getting a tad confused and could she come down before I did something silly?

She arrived a couple of hours later. Hopefully I didn't do anything too strange in the interim!

Monday, 23 September 2013

PIP: MP's ignorance spreads misinformation

Disability News Service just reported that two influential Liberal Democrats have disputed the government's official impact assessment of the new disability benefit PIP (Personal Independence Payment) which is replacing DLA (Disability Living Allowance), saying DLA reform fears are exaggerated.

The impact assessment estimates that 600,000 disabled people will lose the benefit altogether.

But Lord German, the party’s work and pensions spokesman in the Lords is quoted to have said
My guess is we won’t see much difference in shape at the end of it. My suspicion is that it will be nothing like the numbers of changes that people are anticipating. I don’t think these estimates can in any way be made to be accurate.
Meanwhile Stephen Lloyd, Liberal Democrat MP, concentrated on the controversy surrounding the criteria for the mobility component of PIP, which I have already extensively covered on this blog.
In essence the original version of PIP had two major problems.

1) Being able to complete any given task “safely, reliably, repeatedly and in a reasonable time period” (SRRR) was only guidance and not set in the regulations themselves

2) The criteria to receive high rate mobility was changed from 50m to 20m without consultation

Disability campaigners were able to obtain the concession that SRRR should be in the regulations and not merely guidance.
Furthermore a new consultation took place regarding the change from 50m to 20m.

Stephen Lloyd is quoted to have been "furious" about the change from 50 to 20m which "came out of nowhere".
However he mistakenly believes that the SRRR concession means that people unable to walk 50m with SRRR would still receive high rate mobility and is quoted as saying that he
“cannot envisage” how a current DLA claimant could lose their Motability vehicle if they were able to walk up to 50 metres but could not meet the SRRR test.
and
“As a regulation, that will ensure that the vast majority of people who are entitled to a Motability car on the basis of mobility will keep their car.”
He is therefore also "furious" that disability campaigners are still asking that the mobility limit return to 50m.


When I read this article and the views of these two politicians I was literally speechless.

Lord German's "guess" is apparently of more certainty than the government's official impact assessment. Why this is, no one knows. But I am sure disabled people across the country will be heaving sighs of relief.
Personally I will await the publication of the extensive research he must have undertaken in order to make such an important claim affecting several million disabled people. I am assuming he HAS undertaken this research of course...

Stephen Lloyd's comments are even more worrying. This is an MP who votes on disability policy. Yet he is clearly uninformed.
I refer him to the government's own consultation and example 2, p10, of someone who fails to obtain high rate mobility. This person can walk 20m but cannot walk 50m SRRR. Contrary to what Stephen Lloyd blithely and blissfully believes, she is only entitled to standard rate mobility.
Situation:
Sabeen is able to stand and move short distances unaided, usually between 30 and 40 metres. On a good day she can move as far as 50 metres but she can rarely ever go further than this because of severe breathlessness. She can, however, repeat shorter distances with a short break in between.

Assessment Result:
She can repeatedly walk distances of more than 20 metres but less than 50 metres. Aids or appliances do not help her to walk further in a reliable way, so the most appropriate descriptor is C. Based on this Sabeen would receive entitlement to the standard rate of the PIP Mobility component.
This is why disability groups are still campaigning.
Anyone who can walk 20m but cannot walk 50m SRRR will lose high rate mobility. Such people would be unable to leave the house without a wheelchair. If they are unable to self propel they will be electric wheelchair users. These are the people who, if the government does not change its mind, will be losing their benefit or their motability car.

And yes, Stephen Lloyd, I am "furious" about this.
And the fact that you are so ill informed that you are oblivious to our plight and spreading "comforting" misinformation makes me even more "furious".

Wednesday, 11 September 2013

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.

Friday, 30 August 2013

Activism, Welfare and Support

Activism and Welfare

Many disabled people in Britain today feel threatened, scared and under attack. Many do so with good reason as cuts begin to bite, whether it be on the ground via social services, or financially with council tax, bedroom tax, LHA cuts, the uprating bill and possibly the benefits cap (the DWP is so far refusing to establish how many families affected contain a disabled member). More cuts are yet to come with, for instance, the abolition of SDP (Severe Disability Premium), the halving of the disabled child premium for those on Mid Rate Care DLA, or the removal of Disabled Tax Credits (link). Finally many will or are already losing out with the replacement of DLA with PIP, with an estimated 500,000 disabled people losing the benefit altogether.

It is little wonder then that public discourse surrounding disability has, in recent years, mostly focused on welfare. Some disability activists are dismayed by this and regard it as a failing of modern day disabled people and activists. I contest this view. The only reason disability welfare is at the forefront of disability activism is because it is currently the subject of sweeping reform. Many disabled people depend on benefits and it would be irresponsible to ignore this. If reform must take place then it must be done properly so that disabled people are not left without the support they require. So far I have seen no indication that this is the case. Until I do, I will continue to highlight the problems the reforms are throwing up and seek to amend them.

This isn't to say I don't understand the concerns of those who want disability discourse to be about more than welfare. This is NOT what I would choose to be talking and campaigning about. Indeed until a few years ago it wasn't. It was only once the changes started coming in under Labour (including a plan to abolish DLA entirely) that I felt obliged to change tack. I have been on the backfoot ever since, fighting to retain the most basic of support we already had, rather than moving forward and in particular looking at wider more inclusive support and issues than simply benefits.

Changing the Language

However, I also agree that I am uncomfortable with some of the language used by the press, in particular surrounding "fitness to work". We need to ensure that those of us who cannot work get the support we require. On the other hand we need to be careful that in doing so we do not reinforce the stereotype that all disabled people are completely incapable of work.

This is why while I agree some of the decisions made have been totally absurd, headlines like "amputee found fit for work" are completely unhelpful as it reinforces the wrong impression that ALL amputees cannot work. In practise we know that given the right job, support and the right unprejudiced employer, there is no reason some amputees cannot work. We do them a disservice by implying otherwise.

Note: the following paragraph relies on the WCA being correctly applied and disabled people being correctly placed in the support group or the WRAG

I believe part of the problem lies with the DWP language itself of "fit for work". While it may *possibly* be appropriate for people placed in the support group, it is inappropriate for those placed in the WRAG who, in theory, (IF the system were working correctly) are those who can at some point return to work with the correct support. More to the point they are supposed to be those who currently are able to use support to start preparing for work. A better headline might therefore be "Amputee denied support to find work".  

You might tell me this is just language and semantics, but I think it places a different emphasis on things. Instead of trying to divide people into those who can and can't work, those who are fit and unfit, we are trying to identify people who require extra support to enter employment, due to either physical or attitudinal barriers.

As to what language to replace "unfit for work" with, perhaps "face barriers/extensive barriers to work" would be more appropriate. If this is too complex, perhaps just "difficulties" could be used.

Proper Test

Unlike the WCA a proper test should therefore look for and identify what medical, societal and practical barriers to work the disabled person has, so for example including such things as transport and prejudicial discrimination as well as medical and functional impairments. 

If these are so great that they cannot reasonably be overcome then the disabled or sick person cannot be expected to work. Additionally if, when every practical and attitudinal barrier has been addressed the person still cannot work (for instance due to medical issues) then they also should be fully and unconditionally financially supported.

If, on the other hand, the barriers could reasonably be overcome with access to support available through current government funded schemes such as Access to Work, then the disabled person should be given and must use every practical support available to do so. This practical support does NOT happen now and is one of the biggest flaws in the system. Given the time it may take to take advantage of this support, added to employer discrimination, the disabled person should also be fully financially supported.

If the person does not have any significant barriers to work, then they should claim JSA.

Proper Support

Note: This support should be available to all whether or not they are "expected" to work.

Before I became involved with campaigning on welfare, I was partially interested in issues which enabled disabled people to be independent. Examples include the adequate provision of wheelchairs, appropriate social care and accessible accommodation. 
If any one of these is lacking then the disabled person may be unable to work. For instance if they do not qualify for an electric wheelchair but cannot leave the house without one, they cannot get to work independently. If their care agency will not send carers before 9am then they cannot get to work on time. If their house isn't accessible they may be housebound.
If the disabled person has problems with these and they are a major barrier to work, then DWP support should include sorting those problems out in tandem with the appropriate government agency.

Disabled people should from the outset have access to facilities such as Access to Work so they can become aware of all technology and equipment available to them under the scheme. They should also have access to training to learn to use any such equipment if necessary. This could help people both privately and in the workplace. They should also be informed of such things as whether they would get help with transport to work and what limits this would have.

Another important issue is education and training. It may well be the case that newly disabled people need to retrain or, given previous bad record on education, longer term disabled people may need access to higher education for the first time. They should be allowed and encouraged to do so, even if it means being unemployed for longer.

Disabled people should be valued as much as their non disabled counterparts. They should be expected, encouraged and assisted to apply for jobs suitable to their experience and education. It is currently far too common for disabled jobseekers to be routinely directed to inappropriate lower level jobs instead of being given good advice and support.

However it should be recognised that some "barriers" come in the form of reliability, endurance, concentration and other such medical issues. While full time paid employment may be a reasonable goal with support for some, a few hours volunteering may be the only viable option for others. Realistic goals should be set rather than hounding people into full time employment at all costs. Therefore part time and volunteer work should be deemed acceptable and even encouraged for those whose barriers to work exclude any other form of "employment".

For those who are unable to take on any form of employment, paid or otherwise, a more flexible approach should be taken to the nature of "work". Many very sick and disabled people for whom employment is impossible nonetheless attempt to maintain hobbies, sports or leisure activities. This should be supported and encouraged both for long term mental and emotional welbeing or for some, from a colder more practical viewpoint, as possible first steps on a road to recovery. This support could take the form of exploring the possibility of sporting, craft or musical activities in the area, developing IT skills such as blogging and twitter, or signposting to support groups (online or otherwise).

However none of this addresses the prejudice among employers (for instance 45% believe they cannot afford to take on a disabled employee). So parallel to this would have to be a drive to encourage or force employers to take on disabled people on their own merits. This could include dispelling "Health and Safety" myths, dispelling sick leave myths, advertising the Access to Work scheme, improved media coverage, paid work experience placements, and outreach projects with working disabled people, particularly those who are on flexible working patterns. It should also include reminding employers of their duties and responsibilities.

As all of this will take time, it should be accepted that most disabled people will be unemployed for longer. This support should not be time limited as it has become now.

In summary out of work disability benefit should change from just identifying people who can't work to identifying the support disabled people require and taking firm steps to make sure they get it while simultaneously tackling employer discrimination and encouraging more flexible working practises.
I emphasise though that this should be as well as and not at the expense of those whose barriers to work are so great that they are not able to work. However even for this group far more support could and perhaps should be given than at present.

Tuesday, 20 August 2013

Social Services Cuts on the Ground:

I feel very ill today. Not a day I would normally write. But what I heard yesterday was so shocking that I can't settle until I've written it down!

I received a call from Social Services yesterday, asking to come and visit me that afternoon regarding my care plan.
I was very pleased as I had been hassling them for the past three months to come and see me and update my financial assessment to work out my contributions towards my care.

It soon became clear that this visit was nothing to do with this, but was my annual report "to check how my care plan was working out and that everything was ok".
I mentioned my issues with finance and the social services chap duly made a note to contact the finances department upon his return.

The chap was lovely: very friendly and understanding. He had a long sheath of notes from the last time I had gone through this rigmarole so he said we didn't have to go through all the questions yet again. He asked how I managed my carers/Personal Assistants (PAs), what work they did for me, how I managed and if I was happy with what I had. He checked on my safety, particularly asking after the number of falls I have, my alarm button, and my arrangements in case of particularly bad seizure clusters or coming out of hospital.

So far, everything fine and dandy. As we finished up he laughed about the situation with Finance commenting that normally they would chase up any "change of income" like a flash, seeing an opportunity to get more money out of the client.

He then added: (pretty much exact wording as far as I can remember while it is fresh in my mind)
"I mean, at the moment, I'm going round and our clients have to justify the care packages they've already been given. We're told, go out there and do everything you can to save money. If you can find any reason, any small excuse to reduce hours, do it. I have to save a certain amount every week. 

I mean you're ok. I'm going to go back and say "this is great, good value for money, whatever you do, DON'T touch it." But because I haven't saved money with you, this means I'm going to have to cut money from other people I see.

It shouldn't be too bad at the moment because I managed to save £750 from a care package last week, which is great. So they're really pleased with me at the moment... well... I suppose it isn't great for the poor sod who lost his care package, but I mean, I did find them alternatives so I don't feel too bad about it.

You can usually find ways to save money. And I do find people who receive care who shouldn't be. I'm usually really pleased to take away their care. But I mean, they're usually the people playing the system and who should be working but aren't."


I don't know where to start with this statement.

a) I was sent someone here on false pretences. They were not here on my behalf to to "check how my care plan was working out and that everything was ok". They were here on behalf of the council to see if they could cut my hours at the slightest excuse.

b) Targets are being set per council worker, ie per case load. This means that it doesn't matter how much in total need that case load is, a certain amount MUST be saved, regardless of the needs of the individuals concerned.

c) The attitude being fostered is obviously poisonous. This was on the surface a genuinely nice sympathetic guy. Yet he had been suckered into a system where he thought it was right to go round taking care hours away and judging people.

And before you tell me that he is a professional who would know who is playing the system, I would add that he had never heard of lupus, a relatively common and in some cases debilitating autoimmune illness which renders 50% of patients unable to work. Yet on the surface most people "look well". How many of the people he has judged "capable of working" and "undeserving of care" have similar diagnoses of which he is ignorant?

There are a lot of people dismissing claims of problems and cuts in social care as scaremongering. Yesterday's experience is to me direct personal proof of the effects on the ground.

P.S.  I'm spending today feeling guilty at the thought of those unknown unsuspecting fellow disabled people in that chap's caseload who ARE going to lose hours from their care package this week, simply because I did not...

Wednesday, 24 July 2013

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.

Tuesday, 16 July 2013

IDS: Belief vs. Statistics

I am extremely disappointed to once again have to draw attention to Iain Duncan Smith. You would think that having been publicly rebuked by the independent UK Office of Statistics, in addition to the official inquiry by the Committee of Work and Pensions into the use of Statistics by the DWP, that he would now be more honest with his dealings with the media. It would seem this is far from the case.

The benefit cap was rolled out across Britain this week. It imposes a limit on the total amount a family or individual can receive in benefits which is equal to the average earnings (not income). This amounts to £500pw for a family and £350pw for an individual. Disabled people in receipt of DLA or its successor PIP are exempt as are people on some other similar benefits.

Iain Duncan Smith was rebuked by the Independent UK Statistics Authority for claiming that 8000 people had found work as a direct result of the benefit cap. This was found to be "unsupported by official statistics". The chair further added that the figures were "not intended to show the additional numbers entering work as a direct result of the contact". This misuse of statistics had become so routine that the Work and Pensions Select Committee conducted an official inquiry.

This has not stopped Iain Duncan Smith from making the exact same claim on Monday April 15th, this time claiming that 12,000 people have gone into work as a direct result of the benefit cap.

Astonishingly, when confronted on this by John Humphrys, Iain Duncan Smith refuted the finding of the UK Statistics Authority, saying that they had only said there was no evidence of a link. Going further he said that no one could prove that what he said wasn't true and that he "believed" it was.

This is truly mind blowing. This is a minister in charge of sweeping welfare reform. Yet he feels able to ignore DWP statistics, rigorous analysis and an Independent expert body all on the basis of his "beliefs", with the childish retort that "you can't prove it isn't true".

Well on that basis I believe in the Flying Spaghetti Monster (FSM) and since you can't prove it isn't true, then it exists. I assert that 5% of children have seen the FSM and around 8% of adults. I believe that better working conditions should improve this percentage to around 10% as I believe more relaxed people are more open minded..... *sigh*

Two main issues arise from this:

The first is that any statistical claim made by this minister can only be treated with suspicion. He is willing to ignore analysis in favour of what he "believes". He believes this so strongly that he will ignore independent experts. Although I do have to ask: surely ignoring a rebuke by the Statistics Authority to the point of repeating a false claim is misconduct?

The second is potentially more serious. This man has been in charge of possibly the biggest welfare reform Britain has ever seen. In this process how many other experts, analysis and statistics has he ignored in favour of what he "believes" and "feels" is right?

There are good reasons we conduct research and compile statistics when completing large reforms. Manipulating or ignoring them at ministerial level should not be tolerated.

Sunday, 14 July 2013

Access To Work and Volunteering

In what can only be called irony, 2 days after I posted this the government announced they were widening the Access to Work scheme to traineeships, supported internships, work trials and work academies!  Hopefully volunteer work will follow soon.

___________________________

My most public and reported campaigning has been to do with welfare reform, social care and disability benefits. However I have also been active in other areas. For instance I am a keen advocate of the Access to Work scheme, designed to help disabled employees finance solutions to difficulties they might be experiencing. It might pay for things like specialist equipment, travel when public transport isn't possible or workers such as communicators.
I started campaigning in 2011 after changes were introduced which put serious restrictions on what could and could not be purchased.

In my case Access to Work was pivotal in holding down my job as a Research Fellow in mathematics at University. Had the above restrictions been in place my employer would have faced an extra £1000 costs at the very least. It is impossible to say whether it would have affected my successfully getting my job or not, but it is hard to imagine that all employers will happily fork out the money.

Disabled people are used to being creative in getting round obstacles. Most of my fund was used for conventional items: adapted mouse and keyboard, magnification software, accessible desk, portable electric wheelchair for conferences, extra travel costs to pay for accessible travel, notetakers, etc..
However I also used part of my fund to buy a sofa so I could lie down in my office. This took a bit of convincing as you might imagine! This occurred at a point in my illness when I could not sit up for more than 20 minutes at a time before experiencing increasing pain which interfered too much with my creative process. Luckily I could quite happily work lying down. That sofa meant I was able to work from my office rather than home for 2 years longer than otherwise would have been possible.

The 2011 restrictive decision was reversed in November 2012 and disabled people and Access to Work advisors now have much more freedom to decide what is required. There had been a steep decline in the number of people receiving help from the scheme in the past couple of years so hopefully that will be reversed. There have been promises of increased publicity for the Fund and I hope the government will actually deliver. Both Employers and disabled people need to be aware of this source of help.

Access to Work and Volunteering

Despite all this there there remains one big thing I would ask for which is for the scheme to be open to disabled people doing volunteer work. I believe this could be a key step for many disabled people currently claiming ESA, particularly those in the support group, whether or not they will ever be able to take up paid work in the future.

Volunteering is not the same as paid work. It does not necessarily require the same commitment or reliability on the side of the disabled or ill person. For instance someone who is regularly but unpredictably ill might volunteer as an "extra" person. Their presence is a welcome bonus, but on those days they can't attend, the business, charity or social group does not suffer.  This would never be possible for a paid position.
As an example, my local Mother and Toddlers group currently has enough staff to run it, but would always accept more people to help out at one of the crafts tables, or with the reading group. Were a disabled and chronically ill person to volunteer to do this, it would be appreciated, but it would not be a disaster on the days they were too sick to attend.

For many people, particularly those in the support group of ESA, this will go no further. A few hours per week volunteering is as much as can possibly ever be hoped for. Even this may be extremely difficult and unreliable. For others it will always be an impossible dream. However the psychological benefits of going out just a few hours a week and choosing to volunteer cannot be underestimated. Even if it isn't paid work (which currently seems to be all that anyone cares about) it is extremely worthwhile for all concerned.

For some the volunteering may become a stepping stone to something more. This might particularly apply to people whose illness or disability stabilises or improves. They may as time goes on, become more reliable, be able to increase hours and eventually progress to a point where they feel able to move on to paid employment.

All of this is irrelevant though, as for many disabled people none of this will be possible without help from Access to Work. I strongly feel opportunities are being missed.


Important Note: I am talking here about volunteering, the key word being "volunteer". This should be the complete choice of the disabled person. It should be something they themselves feel capable of doing and with the advice and blessing of their doctors/consultants. It should be done completely and utterly without coercion of sanctions and without fear of withdrawal of benefits.

Wednesday, 10 July 2013

Extremist? Moi?

Extremist: a person who advocates fundamental political, economic, and social reforms by direct and often uncompromising methods.

Wow. That sounds pretty scary. I'm thinking violent demonstrations, perhaps even possible terrorist activity from people making unreasonable and impossible demands.

But actually apparently I'm talking about myself, which I have to say comes as a bit of a surprise.

For the past couple of years I've been involved in some disability activism. This has taken various forms. Posting on this blog is one. Writing to my MP is another. Signing petitions such as the WoW petition which simply asks the government to do an impact assessment on disabled people of their welfare reforms is yet another.

My main success has to be of course the Spartacus Report. Using government data this carefully constructed 40 page long report contradicted the government report which claimed disabled group's responses to a consultation were in favour of replacing the disability benefit DLA with PIP.

Although I was the main co-author it was written and coordinated with a number of other fellow disabled people (all names in above link). The research was well received and acknowledged. It has been used countless times in Hansard and investigations by committees such as the Joint Committee on Human Rights.

Following this the We Are Spartacus network was born. With my failing health I am much less involved, but there have been other great people to take up the task.  
Further reports were researched and written, from responding to further consultations, to analysing the effects of the implementation of PIP to warning about problems implementing a cap on social care in Worcestershire. These were also well received and used. 
Members of the group are now involved in discussions with politicians in an attempt to improve policy, including forming part of the Labour Taskforce.

It was therefore a surprise in today's Opposition Debate involving the Cumulative Impact Assessment to hear the We Are Spartacus group being called "an extremist group" by Paul Maynard MP.

I understand that being criticised and disagreed with may not be pleasant, but lying in bed with a laptop, looking up government figures and statistics and then writing long winded polite reports pointing out potential flaws in disability policy is rather a long way from extremist activity!

We were not the only ones singled out. We were joined on the naughty step by Pats Petition and the WoWpetition, who had the temerity to set up a petition asking for the Cumulative Impact Assessment. Both have been signed by 49,000 and 65,000 people respectively, presumably also all extremists. 
Astonishingly we were later to be joined by the independent, non partisan Citizen's Advice Bureau who were accused by the Minister for Disabled People Esther McVey of being biased and left wing. They had made the mistake of recently criticising government policy.

It is fairly obvious that pointing out problems or flaws in disability policy is enough to be publicly smeared in the House of Commons and labelled biased, left wing, or extremist. This is not conducive to constructive dialogue, which is essential if any progress is ever to be made.

There is much anger following these insults. It is my worry and my suspicion that this may, in fact, be intentional. Some people are now wondering aloud if they should "act like extremists", saying after all, that if that is what the government wants, that is what it should get.
This is extremely dangerous. Any foolhardy act will only give fuel to the government's allegations. They will then in all righteousness be able to refuse to engage in any further dialogue.

It is therefore vital at this point to keep calm and ignore the insults that keep coming our way. In the mean time we must continue to do what we have always done: expose the facts and try to find new solutions. Let them call us extremists for it if they must. And if that really is the new definition of extremist, then so be it. I have done nothing to be ashamed of. In fact, I am proud of it.




Note: In a bizarre twist, when pushed on his "extremist" slander by Anne McGuire, Paul Maynard MP started angrily talking about special schools. This is strange because WeAreSpartacus has never had anything to do with this issue in any shape or form that I am aware of... Weird!

Friday, 28 June 2013

Inspiration to Scrounger, a personal story

I wrote this post in anger after one too many people accused me of being lazy with zero knowledge of my illness or background.
________________________



MOBILITY LANDMARKS
AGES: 19 ,  20,  22,  25, 31

Image is a purple background with butterflies and a caption "a lupie life". 
It shows 5 photos of the same woman of increasing age (19 to 31) from left to right. In the first she is jumping, in the second standing with a walking stick, in the third sitting in a manual wheelchair, in the fourth using a powerchair, and in the fifth lying reclining on a daybed. She is smiling throughout. 

Sick or Lazy?

So why don't I work? The main problem for me is that my main illness, lupus (SLE) has not responded well to treatment. Over the course of the past 17 years it has gradually affected more and more systems in my body, causing a long list of symptoms ranging from minor to major, not to mention overall issues such as severe pain and exhaustion. It is easier to list the specialist consultants I haven't seen than those that I have. I no longer know how many scans or biopsies I've had, nor how many stays in hospital. I've simply lost count. There are very strong drugs which do help but I am still continually "ill".

On top of all this I have a separate disabling muscle condition which is progressive, hence for instance the use of my electric wheelchair and the need for personal care from social services.

The mobility side of things got worse quicker but did not prevent me from working, thanks to a very accessible job as a university mathematics researcher (yes, some of us enjoy that sort of thing!). I did work while very ill but 14 years on things eventually progressed to a point when it was simply no longer possible to continue.

Ever since then I have had to put up with being called lazy, accused of not doing enough to get better, or not having a positive enough attitude.

The irony in this is that for the previous 15 years it was the complete opposite. I was called an inspiration. Note that I have had no control over how ther people have chosen to see me. They have lazily assigned me to a stereotype: supercrip/benefit scrounger.
Yet all along I have been exactly the same person, with the same character, determination, willpower and desires.

My Track Record 

The "inspiration" years:

Jan 1996-1997: Start of illness exactly one week before my 17th birthday (triggered by a minor head injury in a sport accident). 18 months off school, undiagnosed, untreated. I'm permanently sick, have lost all sense of balance, am unable to sit up and spend most of the time undergoing medical investigations.

1997-1998: Illness goes into what we will later know is a remission. I'm still undiagnosed but we put everything down to a "glitch", decide I'm "cured" and I go back to my "old life". I relearn to walk, return to school and do my A-levels.

1998-1999: First Year of University
I start University. The illness returns in Easter. I'm still undiagnosed. Due to symptoms from seemingly separate muscle condition I require social services care. I get kicked off my Chemistry course for "health and safety" reasons. My doctors tell me to give up, go home and take a year or two off until things get better.

1999-2002: University Degree
I decide to ignore the doctors as without diagnosis I have no guarantee things will improve. I start a new university course in mathematics on the basis I can do this from home if required.
I get diagnosed with Lupus (SLE) but treatment is only partially successful. I have numerous flares. I am housebound for months at a time. Some semesters I miss all lectures. I spend unpredictable time in hospital. I develop more and more symptoms such as poorly controlled epilepsy. Mobility wise I deteriorate from walking with a stick through to using a manual wheelchair.
I am offered a deferral by the university but turn it down, reasoning that I cannot be sure I would be any better the following year. Instead I need to find a way to work while ill. I learn to work solo from books and photocopied lecture notes.
Thanks to this I excel at end of year exams and eventually graduate top of my year with a first.
I win the Second Year Prize, the Final Year Faculty award, a joint University-City Outstanding Achievement award, Young Achiever of Hampshire award and a Golden Hello awarded to outstanding students for starting their PhD.

2002-2005: PhD. 
Both lupus and muscle related symptoms deteriorate steadily. I face numerous health scares (eg during one epilepsy deterioration I am "bluelighted" to hospital no less than 9 times over the course of 3 months). I have to cope with an increasing number and severity of symptoms as more systems are affected.
I start using an outdoor electric wheelchair in 2004 as soon as I get accessible accommodation and office.
During my PhD I am housebound for a total of 20 months off and on. I'm also in and out of hospital and unable to work at all for a total of 6 months. I end up working very strange hours as am often awake most of the night with pain or other unpleasant symptoms I won't go into. It isn't uncommon for me to be doing mathematical research at 3am to take my mind off it!
Despite all this I finish on time and write a highly influential international standard paper which nets me a very competitive and prestigious EPSRC fellowship.

2005-2010: Research Fellowship.
Due to the effects of my illness I go 75% part time, having estimated that I am too ill to work 20% of the time.
I can only go to work mornings due to a complex and varying mix of symptoms and a worsening problem sitting up for more than a few hours due to my muscle condition. I sleep afternoons and then work evenings/middle of the night when I am often awake due to poorly controlled pain. (While I could take better painkillers, the side effects would affect my cognitive skills too much for me to be able to continue my job as a researcher).
I still go to selected conferences and seminars to give my talks even though it makes me ill for over a week afterwards.

As time goes on I have to cut down on the number of days I go into the office.
By 2008 I am only going into the office 1 morning a week. I an now using an indoor electric wheelchair. I can no longer physically write, which impacts quite drastically on my ability to do my job. My health is very bad. I am now often not only housebound but bedbound too. There are numerous hospital emergency inpatient admissions. I have to have time off. By 2010 this will have added up to a total of 18 months.

However I still don't stop yet; not so much out of a sense of obligation, but very simply because I love my job and don't want to give it up until I absolutely have to.
And so I continue my research, whether in bed or in hospital. I advocate the use of telecommunication to work from home and even give guest talks remotely thanks to new technology. 
Thanks to this I am able to complete my research, establish my reputation as a young upcoming researcher and write 3 more successful international standard papers. 
Unfortunately by this point the illness has started affecting my cognitive skills, in particular my short term memory, which makes continuing in this line of work impossible.

2010-present: The "scrounger" years:
I finally realise that I have to give up work and I start claiming ESA (out of work disability benefit).
My illness has continued to deteriorate as has my muscle related disability. I am now bedbound 95% of the time. I am continually ill along with periods of flares when things are even worse. So far I have had many more hospital admissions every year.
After seeing the erosion of the state support which had allowed me to go to university, do my PhD and get a job despite being ill and disabled, I start online disability campaigning as and when able to. DLA had bought my electric wheelchairs, ILF had allowed me to return to university, DSA helped me as a student, Access to Work helped me be a researcher. All of this has either gone or had cuts. This activism really takes off in 2012 with the Spartacus Report and Past Caring in particular.

From "Inspiration" to "Scrounger"

Yesterday I was admired by society and held up as a shining example others should follow (whether or not it was, in fact, possible for them to do so). Whether or not I wanted or deserved it, I was considered "inspirational" and a "positive example and role model". I was "breaking down stereotypes and barriers". (See previous posts for disablist comments from academics who didn't think "people like me" could do a "job like this").

Yet in the blink of an eye I turned into someone despised by society, someone suspected of being "lazy", being "irresponsible" and "not trying hard enough", someone told to "get a better attitude". In short, I've gone from "inspiration" to "scrounger".
I think this upsets people because it doesn't fit the correct "story". A disabled person is supposed to "overcome" their disability.  You're supposed to start out a scrounger and become an inspiration, not the other way round! If you become "inspirational" you're supposed to stay "inspirational".
I knew all along that I would eventually have to give up work. When people made nasty comments in my presence about disabled people who didn't work, I would point out that one day I too would be unable to do so. This made people very uncomfortable. Many simply refused to believe me. It just didn't fit the steterotypical narrative they wanted to believe in.

My own view is that although I am proud of some of the things I did (as anyone would be, disabled or not) I was not doing things to be "inspirational", but simply, like anyone else, because it is what I wanted to do (in fact I consider myself very lucky to have had the privilege to do a job I loved, if only for a limited time).

I think it is important to note that the fact I was able to do all these things was in part due to "luck" as much as anything else.
Had my illness started earlier, then I would have got sicker quicker and would never have worked at all.
Had I not received the support I did (social care, benefits, friends, family, employer), I would not have been able to work at all.
On the other hand, conversely, had my illness started later or even not at all, I would still be working today.

That is all there is to it. Nothing to do with character or willpower or attitude.
The same goes for every other sick and disabled person out there.
It is time to stop judging. We all deserve the same respect and support whether we are still working or not.



MOBILITY LANDMARKS
AGES: 19 ,  20,  22,  25, 31

Image is a purple background with butterflies and a caption "a lupie life". 
It shows 5 photos of the same woman of increasing age (19 to 31) from left to right. In the first she is jumping, in the second standing with a walking stick, in the third sitting in a manual wheelchair, in the fourth using a powerchair, and in the fifth lying reclining on a daybed. She is smiling throughout. 


Note:

A stark reading of how my illness has progressed is pretty grim. The problem is that a list of medical facts as above simply doesn't show the whole picture and is not representative of my true life. There is SO much more than just my illness. And thanks to that my life has been surprisingly good.

Obviously there have been some very dark moments and a need to adapt to my changing and worsening situation. With a progressive condition this can be difficult. No sooner have you got your head round one limitation then another comes along and slaps you in the face.
But overall I am and have been pretty happy throughout. Whether it be hobbies, friends or family, there is plenty in my life that is very good and most of the time it is more than enough to make the emotional difficulties which may sometimes arise from my illness take second place. 

Friday, 10 May 2013

No More Collin Brewers

It was a horrible story but one which did not surprise me overmuch.

Collin Brewer

Collin Brewer, a Cornwall councilor, came into the media spotlight a few months ago for comments he had made in 2011 to a "Disability Cornwall" worker at a charity event, saying that "disabled children cost the council too much and should be put down."

While offensive in the extreme I'm sad to say that I know that a number of people do feel a similar way and secretly feel that maybe it would be kinder to let disabled children (and some adults) die. It is too often seen when people say that they would rather die than be disabled, or that it is cruel to let a child suffer (ie be disabled). A lot of this is due not to malice, but plain fear and ignorance, something I addressed in a previous post "Better off dead? Time to educate".
However this was rather different as this was not about the wellbeing of the child but callously purely financial considerations.

After a lengthy investigation the Independent Standards Committee ordered Collin Brewer to write a letter of apology, 18 months after the incident itself.  There was public outrage at the leniency of the punishment and the fact that a councillor with such views could remain in office.

Originally defiant, Mr Brewer gave many excuses for his comments, ranging from trying to provoke a debate, to a flippant remark, to being "hot under the collar" due to a budget meeting. Although he said the comment was a mistake and not something he believed, he also drew attention to people who supported his views, repeatedly mentioning receiving messages of support, including in particular from other councillors who agreed with him.

He eventually resigned only to stand again for re-election just 2 months later and in a shock result won by a margin of 4 votes. In a sickening twist he praised the media attention he had received, saying it had done him a "power of good", "promoting" him and making him "well known".

Disability News Service have since interviewed Mr Brewer to get to the bottom of the story. There can now no longer be any doubt about his views. He openly says that there is a good argument for killing some disabled babies. He first likens the situation to a conversation he had with a farmer who has to put down deformed lambs at birth and then bitterly complains of the burden of disabled children on the council once their parents die.

This is a free country. People are allowed to hold this view if they wish without being arrested for it. However it is difficult to see how it is possible for an elected official to responsibly and without prejudice carry out their duties which will have repercussions on disabled constituents if they consider their lives to be worthless and think they should be dead.

People are now once more protesting and calling on Mr Brewer to resign. Others are complaining that you shouldn't be punished twice and that you can't override democracy.
This puts me in a difficult position. I do not think that Mr Brewer is fit for office. However I also agree that you can't punish someone twice for the same crime, nor that you can disregard an election simply because you don't like the result.
On the other hand it may be that Mr Brewer in his joy at being reelected has said quite enough other offensive things since his reelection to warrant another resignation! The DNS article speaks for itself.

The Real Villain

In my opinion there is a villain of the piece which has not been mentioned enough and that is the Law and the Independent Standards Committee.

  1. Why was a letter of apology deemed a sufficient response? Forget resignations, surely we should be able to sack politicians for such offences.
  2. Why, after someone is forced to resign for such a serious reason as this, are they allowed to stand again  for reelection just 2 months later?

We need to ensure that behaviour of this sort is stamped on strongly. Our politicians need to know that it will not be tolerated and that they have a duty to properly represent disabled people (or any minority for that matter).
We need to ensure that should a politician have been found to fail in this duty and had to resign, that they are banned from standing again.
I think this is perhaps what we should be focusing on. This is what we should try and change.

Getting Collin Brewer to resign solves this particular case but will not stop it from happening again.

On the other hand if we could review and change the procedures which are in place to deal with such misdemeanors and the rules for re-election once resigned or sacked, then we could ensure that there will not be another Collin Brewer. One is quite enough.


Monday, 6 May 2013

Disabled? No comments from you!

The BBC ran a health story today reporting that 25% of adults walk less than an hour a week. This was based on a poll from the Ramblers Society conducted on a sample of 2000 adults.

They were running a "Have Your Say" comments on it and I idly posted wondering if they had taken disabled and elderly respondents into account who couldn't walk well in the first place.

My reason for asking is quite simple. Since becoming a wheelchair user and, more recently, mostly housebound, I have been very amused at how much I can skew polls, surveys and things such as character tests.

The most recent example was the "Great British Class Test" which tried telling me I wasn't cultured. As someone educated to PhD level who listens to classical music, is an avid reader and watches things like history documentaries and theatre, this was somewhat baffling. It eventually turned out to be because I never left the house. If you took into account things I WOULD do if I physically could (and in fact things I was doing until just a few years ago) the results were very different indeed. I tweeted about this and it was picked up and discussed in a BBC Ouch! article.

Going back to the "25% of adults walk less than an hour a week", if I had been phoned up for the survey and agreed to take part, I would imagine it would go something like this:
Are you over 18?
Yes
In any given week would you say you walked over 7 hours a week, 4-7 hours, 1-4 hours, or less than an hour?
Well, less than an hour, but...
That's great, thank you for your time
Yes but, that doesn't really count you see because...
Thank you.
I very much doubt there was a question like "Do you consider yourself disabled?", which in any case wouldn't help as it wouldn't necessarily affect walking. "Are you able to walk?" wouldn't be any better as some people are able to walk but only stupidly short distances. They understandably won't be walking for miles each week!

Given that there are 2.55 million blue badge holders in England alone (roughly 5% of the population), not taking mobility difficulties into account could make a difference to the results. Even people who aren't disabled enough to hold blue badges might still have significant difficulties.

Disabled and elderly people make up a significant proportion of the population. Yet when these polls and surveys are made we are blatantly often forgotten about. Questions are often irrelevant and there is no "not applicable" option. I often take the results with a pinch of salt as a result.

This isn't so much a problem when I'm taking a test for fun, but it *could* be an issue when survey results are used to decide government policy, issue health guidelines or perhaps make business decisions in private companies.


I was highly amused though to see that my comment was lambasted by other readers. It got a high number of negative votes.
I was less amused to see that another reader who agreed with my comment and explained that their pain and wheelchair use meant that they didn't walk also got negative votes. What kind of person does that?

So why was my comment disliked so much? I'm not really sure.
Was it precisely because people felt that as a disabled person who couldn't walk I WAS irrelevant and shouldn't be commenting?
Was it because people (probably wrongly in my experience) thought the poll creators would have thought of this?
Was it because people were having so much fun being holier than thou and telling everyone how much they walked and therefore how better they were than most of the population that they didn't want any comment that might cast doubt on it?

So two points.

  1. All you poll and survey creators out there: we disabled and elderly people do exist. Remember that, otherwise your results WILL be skewed.
  2. Disabled people are allowed to comment on topics concerning activities they can't partake in. Disability is a valid reason for not walking an hour a week. Marking down a comment saying so is a sad comment in itself on the BBC readership. 


Thursday, 2 May 2013

Fighting illness isn't always about battles



I like days like today.
I woke up feeling terrible and have felt very ill all day. (I know I'm definitely ill when I switch on my favourite video game, pick up the controller, groan and switch it all back off again!)
BUT... I have had a good day.
TAKE THAT illness! *pulls rude childish faces and blows raspberries*

I got to spend some all too rare time with my youngest sister who leads a hectic lifestyle in London as a freelance classical musician (french horn). She had stayed the night and I HAD intended to take her out for lunch.
I was most put out as I had been doing really well recently (relatively speaking) and was sure I would be well enough to do so. But after learning that pizza is apparently very expensive in London for some reason, I ordered some and we had a picnic in the garden followed by strawberries. She then went off to catch her train.

By then I felt far too ill to do anything at all, so slept and watched my fish tanks all afternoon. By evening I felt well enough to speak coherently with my friend who had come to visit. We had a good old chat before watching a couple of episodes from "Game of Thrones". We have both read the books so know the plot, but are really enjoying the series anyway. It is very well done.

I hope I will feel better tomorrow, but if I don't I have plenty of little short things I can think of to do even while feeling dreadful.

So there you have it. Today might have been considered a loss and a failure. I didn't manage to take my sister to the pub. I was incapacitated for the majority of the day. And let's face it, I felt like death warmed up!
But in fact I enjoyed my time with my sister anyway, had a wonderful lunch, some precious time outside the four walls of my flat and an enjoyable evening with my friend. I call that a win.

Had I tried to "battle on" and go to the pub one of two things would have happened:
1) I would have collapsed or had to come home early and caused a scene and great distress to my sister.
2) I would have "made it" but not enjoyed a minute of it and caused worry to both myself and my sister as we would both have been wondering if I was about to collapse.
Instead I was able to spend a relatively pleasant time with sister despite the fact that I wasn't feeling at all well. Neither of us was worried or concerned. We enjoyed our meal. We enjoyed our surroundings. 

Had I tried to "battle on" during the rest of the day and do things, I would not have been able to enjoy the evening with my friend and, from past experience, I know I would likely be very ill tomorrow. As it is there is every chance that I will recover. If not, well, at least I have given myself the best possible chance to do so.

I didn't manage to get much done today but, well... there IS a reason I'm on long term sick leave from work! Right now it means that if I have to put things off to tomorrow, or the next day, or the day after that, it usually isn't the end of the world.

I strongly believe that beating the illness isn't always about battling on and doing things despite it. I think it is about enjoying life even when feeling very ill and even when your plans have gone awry.

Wednesday, 1 May 2013

BADD2013: Can or Can't Work, a Disability Dilemma

Today is Blogging Against Disablism Day 2013. For more posts visit here.


Despite huge advances in accessibility and support disabled people remain underrepresented in education and work.

According to the Office for Disability Issues:
19.2 per cent of working age disabled people do not hold any formal qualification, compared to 6.5 per cent of working age non-disabled people
14.9 per cent of working age disabled people hold degree-level qualifications compared to 28.1 per cent of working age non-disabled people
In 2012, 46.3 per cent of working-age disabled people are in employment compared to 76.4 per cent of working-age non-disabled people.

It is perhaps unsurprising then that while I was still working as a university researcher (and previously as a PhD student) I met what I would term "casual disablism" in the form of total disbelief that somone "like me" could do a job "like this".  

It was very common for people to ask why I was in the university building where I worked. I distinctly remember one conversation (but by no means the only one):
What are you doing here, love, can I help you find the way out?
No thanks, I'm fine. I work here.
Oh, that's nice. Have they found you a job in the office?*
No, actually I'm one of the researchers. I'm on my way to my own office.
Really? I didn't think people like you could do that sort of thing
*Not that there would be anything wrong with an office job, but it was the "found you" (as though it would be "make work") and the belief that I couldn't possibly do anything else which was rather telling.


While I was still establishing myself as a researcher and people didn't yet know me, I had the same problem at conferences. Another example is this conversation:
Hello, are you lost?
Um, no. I'm the invited guest speaker...
Oh my goodness. That's amazing. You'd never think so, would you?

I found the attitude from people at conferences deeply worrying. You have to understand that these were not only my peers and colleagues with whom I would work with on my research, but also my future interviewers for any job that I might apply for. If this was their attitude toward disabled people it did not bode well. This was semi-confirmed when I phoned up to confirm wheelchair access for my first important job interview and I was asked if "I was sure I was up to the job".

I have to say that there was a part of me which always found all of this rather strange, given the famous icon Stephen Hawking who is trotted out whenever anyone says they are too sick to work.  Either all disabled people are like him, in which case people shouldn't have been astonished to see me in my electric wheelchair, or he is an exception to the rule, in which case he shouldn't be used as a stick to beat people who are too ill or disabled to work.


So I'd like to move now to a dilemma this poses. I have a progressive illness which has got much worse over the years. I did my degree, PhD and worked for 5 years with increasing disability, but, more importantly with increasing illness, more and more time off sick, working from home, more and more part time and symptoms which interfered with my work. Eventually I had to call it a day and am now claiming long term sickness and disability benefit, ESA.

ESA and the test for claiming it (WCA) are deeply controversial and need much improvement. I myself have steadily been campaigning for this in any way I am able to. However, when fighting for improving this process, we need to be very careful not to reinforce the stereotype that all disabled people are unable to work or do high grade jobs. It is a very difficult and fine line to tread.

As I have had a very good job as a disabled person and as a very ill person I know that it is possible to 
a) work when very disabled
b) work when very ill
c) be too ill to work

When campaigning against welfare reform people sometimes hold up a specific example of a person who was refused their benefit to illustrate that the ESA process is flawed. I find this very dangerous as it risks reinforcing the disablist belief that every single person with that same impairment, disability or illness can't work.

I strongly believe that everyone should receive appropriate support. 

If they are truly unable to work then they should receive sufficient support to live adequately and not be hounded as they are now nor made to feel guilty or unworthy. Changing people's perceptions is key here. It IS possible to be too ill to work. Many people still believe for instance that if you can use a computer then you can work. I wrote about this in #BADD2012. The government itself would do well to listen.

If they feel able and want to work, then they should receive every bit of support available to do so, even if they are very ill or very disabled and regardless of whether or not they would "pass" the "fit for work" test to receive benefits. Indeed, I would have been eligible for incapacity benefit or ESA right from the start of my illness, but as I had a flexible job with a supportive employer, I felt able to work. I therefore did not claim it and instead received very good support to help me work instead such as Access to Work.
Therefore increasing funding and availability of Access to Work and simultaneously working with employers to increase their willingness to be supportive and flexible is crucial. But changing the perception that disabled people can't work or hold down high level jobs is also key. 

Juggling changing both perceptions at the same time is a complete and utter nightmare. But it must be done.

Tuesday, 30 April 2013

How I accidentally started a Universal Credit myth

So I was browsing away yesterday and I came across this rather unbelievable website.

This is the official government website for online claims for three current benefits: Disability Living Allowance (DLA), Attendence Allowance (AA) and overseas pension.

I was amazed and appalled to discover that it is almost impossible to claim online unless you have a computer from the stone age. The website states that you will not be able to use the system or will experience significant difficulties if you use:
  • Macs or other Unix-based systems 
  • Windows Vista (and seemingly Windows 7 and 8)
  • Internet Explorer 7, 8, 9 and 10, 
  • Chrome, Safari or Firefox,
  • a smartphone. 
  • Jaws or Supernova screen readers
People with any of the above systems must obtain or print out and complete a paper form.

I found this immensely worrying given that Universal Credit is being rolled out today as an online claims only, without the possibility of a paper claim. If this is the quality of IT service we can expect, there are going to be big issues. Thankfully there is no evidence that the new Universal Credit IT system has any of the above problems.

EDIT: SEPTEMBER 05: It would appear the promised working IT system simply isn't operational yet, with £34m already written off and claims having to be checked by hand. I suppose that solves the issue...

EDIT: NOVEMBER 09: It seems the IT system is mostly irrecoverable and will have to be started again from scratch with anything from between £140 million and £300 million.
I have by now long since given up updating my "Universal Credit, but we're still on track!" blog post as fiasco after fiasco has come to light.

Regardless, finding the situation farcical beyond belief, I sent out the following tweet:
You can now claim #DLA online,as long as you don't use:a smartphone,MAC,Unix,Vista,Chrome,Safari,Firefox,IE7,8,9 or10 http://www.dwp.gov.uk/eservice/need.asp …
This initially caused a lot of amusement with people commenting that maybe carrier pigeons would be useful or stone and flint.

However when I came back the next morning I discovered that, perhaps due to the coincidence of Universal Credit being rolled out today people had mixed the two stories up.

There are now many people running with the misconception that Universal Credit can only be claimed with the above  restrictions.
As far as I know this is not the case.

The myth that you need Windows XP and can't use Internet Explorer appears to be truly running now though and I'm very much afraid that it will be impossible to stop.

EDIT: The DWP have now released the following tweet:

works with Chrome, Safari, Firefox, recent versions of IE as well as smartphones and tablets.

I just hope enough people see it!

Wednesday, 24 April 2013

Crossing the line into organised propaganda

EDIT: May 30th
The posting of this blog led to stories in both the New Statesman and Liberal Conspiracy. The issue had been strongly followed up by Sheila Gilmore MP among others and prompted a petition by disabled activists Jayne Linney and Debbie Sayers demanding an inquiry into Iain Duncan Smith which attracted no less than 98,000 signatures.  All of this has had an astounding resolution.

  1. May 9th Iain Duncan Smith was officially rebuked by the UK Statistics Authority
  2. May 17th The Work and Pensions Select Committee announced it will conduct an inquiry into Iain Duncan Smith's use of statistics as part of its annual assessment of the DWP Annual Report and Accounts (ARA). In preparation the committee plans to hold a session with the UK Statistics Authority to see how the department should correctly be using their statistics.
  3. May 30th Grant Shapps was also officially rebuked by the UK Statistics Authority
____________________________

This month saw sweeping changes to the welfare system which impacted on disabled people. In particular Disability Living Allowance was replaced by Personal Independence Payments and the Bedroom Tax came into play, which disproportionately affects households with a disabled member.
Elsewhere Employment and Support Allowance (ESA), the benefit paid to those too ill or disabled to work continues to provoke controversy, with a discredited assessment (WCA) and a backlogged appeals process.

It was maybe not surprising then that, perhaps fearing a reversal of public opinion, ministers from the Department of Work and Pensions decided to act by releasing a number of press releases to support their actions.

This would not be a problem IF they were accurate. It would have still have been acceptable albeit  slightly upsetting if, as is often the case, the statistics were "spun" in their favour. However what actually happened was in my opinion unprecedented and unforgiveable. We saw a string of stories which were completely untrue and highly damaging. I put that a line was crossed into organised propaganda.

It seems others may agree. The former chief economist of the DWP finally spoke out talking of "a consistent pattern of ministers trying to manipulate statistics to their own political ends". MPs have also called for an official inquiry into the manipulation of official statistics by the Committee of Work and Pensions.

In Order these are the Stories.

Over the Easter Weekend on March 30th, two damaging stories came out, one surrounding DLA and the other ESA.
This was proved to be totally misleading.  This is the sum total of people who had abandoned their claim over a 4 year period since the beginning of ESA and is simply the usual amount of those people with shorter term conditions who rapidly move on and off the benefit. This is confirmed by the government's OWN analysis which says

“Current data does not allow anything conclusive to be said about the destinations of closed and in progress cases, nor to infer what would have been or would be the outcome of assessment."

“An important reason why ESA claims in this sample were withdrawn or closed before they were fully assessed was because the person recovered and either returned to work, or claimed a benefit more appropriate to their situation” 

Unfortunately truth is irrelevant. The 900,000 figure has now entered benefit folklore and is brought up by the general public whenever disability benefits are mentioned as proof that many people are abusing the system and will abandon their claims if challenged.

Please see my previous blog post for more details.

  • 2)  Esther McVey, Minister for the Disabled appeared in an article for the Daily Mail. In this she gave a strong impression that many were claiming unnecessarily and even fraudulently. She also said there had been a rush on claims in the run up to PIP to avoid assessment.
It was reported that she would "go after bogus disabled... some of them DO get better!"
She "says many who get DLA and are officially assessed "disabled" are no such thing: Only three per cent of people are born with a disability, the rest acquire it through accident or illness, but people come out of it. Thanks to medical advances, bodies heal."

This was just short of accusing DLA claimants of fraud and/or mindbogglingly ignorant. People who acquire disabilities later in life are just as disabled as those who are disabled from birth. Many such illnesses and disabilities are incurable and life long despite current medical science: for instance Parkinsons, MS, lupus, amputations, paralysis, blindness, schizophrenia, autism but to mention a few off the top of my head.
Furthermore she is being deliberately misleading as under the current system those who have more short term conditions will be given shorter DLA awards of 1 or 3 years.

She then went on to say:
The decision to introduce new tests has produced an extraordinary ‘closing-down sale’ effect, with rocketing claims as people rush to get their hands on unchecked ‘welfare for life’ before McVey’s axe falls on April 8.
Again, this has turned out to be untrue. While the total number of DLA claims has indeed increased, the number of DLA claims among working age people (ie those affected by the changeover to PIP) FELL. So this is in fact the direct opposite behaviour to that claimed by the minister.

Making one untrue statement using misleading figures to back it up is bad. Doing it twice having had it pointed out is completely unforgivable.
  • 4)  On April 24th, Iain Duncan Smith gave a press release claiming that "one million who are fit to work have lived on benefits for 3 of the past 4 years".
This is the front page of the Telegraph and news in the Daily Mail and the Express.

Once again the headlines are untrue. The claimants are not "fit for work" nor even "capable of trying to find a job". Upon reading the articles it becomes clear that the figures include people who are in the Work Related Activity Group (WRAG) of ESA. 
By the DWP own figures on ESA "fit for work" decisions, these people have been found unfit for work. Unlike people in the support group though, it is felt that they will eventually recover at some time in the future. Right now though, they cannot work. 
When the WRAG was first conceived of, it was felt that it would take 2-5 years for people placed in it to return to work. It is therefore perfectly feasible that WRAG claimants have been claiming ESA for 3 of the past 4 years without being "stuck" or fraudulent.
Once again figures are being used to stigmatise disability benefit claimants.


In 4 weeks, 4 misleading news articles.

In 2011 the Work and Pensions Select Committee severely criticised  the way the government was releasing official statistics. It reported this was leading to negative views of long term disability benefit claimants not only in the tabloid press but the mainstream press as well. It noted that many newspapers had subsequently had to publish corrections.

At the time the minister replied "the government could not control the editorial approach of tabloids" and was often "bemused" by the stories which ran.
I would put that this excuse no longer washes.

Current ministers are releasing untrue statistics and making false statements. The proposed investigation must go ahead at the earliest opportunity and the practise stopped. A whole section of the population is being demonised for political gain. It must not continue.


Your help

A petition has been started by disability campaigners Jayne Linney and Debbie Sayers to the Work and Pensions Committee asking them to commit to hold Iain Duncan Smith to account for his (mis)use of statistics.
It has had a huge response with 38,000 signatures at the last count.
You can read an article about it's success in the Guardian here (when it still only had 16,000 signatures).
To add your signature please go here. Thank you.