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.

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.

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.

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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.

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!