Tuesday 9 October 2012

Disability's Not Working

Following up on my post about working with a long term illness or disability, I'm writing today to ask for your help.

I've devoted many months of energy to fighting the welfare bill but there is another fight I always believed we must fight.

The Great Employment Battle.

The stigma and sanctions and insults of the current welfare to work debate have made the very word "work" hold a certain terror. No more an aspiration or a dream, something we hoped for more than anything. Now, if you have a significant illness or disability, work is a threat, with the ultimate punishment of unlimited, unpaid labour.

I've read endless reports and policy papers discussing us and I find it hard to believe anyone with a fluctuating condition or complicated lifelong disability ever went anywhere near the processes. I see a bunch of zealous blue-sky-thinkers sitting around a table, designing a system with the worst of humanity in mind.

A lot of them don't seem to like us very much. They think we're "too stupid" (Field) "festering feckless stock" (Freud) I'm fairly sure Carol Black compared sickness and disability to a typhoid plague in a recent paper I read.

And because they don't like us very much, don't know who we are, don't live our lives, they do the only thing they know. They pick up a bigger stick to hit us with each time they get round that table.

I set out to shine a light on our lives and this is surely one of the most frustrating areas of living with a long term condition? It always was for me. I thought endlessly about it. How the benefit system was designed to keep me out of work. How no matter what I did, the sanctions of finding work were all so punitive, I could never dare try. The unpredictability of my attendance, the variability of my symptoms all meant sanctions just trapped me.

Why? Because all the schemes and policies were designed with the assumption that I could "work" like anybody else. I can't. Hence I can't work. The work is not flexible enough, attending an office reliably is too difficult, the business is given no protection from government for any extra costs they might incur by employing me. I don't mean for adjustments, I mean for extra time off or annualised hours contracts.

Businesses are neither incentivised or mandated to employ people with disabilities. No-one has ever had a sustained conversation with business about the benefits of employing people with long term conditions and disabilities, asked for their co-operation, built a coalition of companies prepared to make this a priority.

No-one has looked at our skills and asked how we might contribute to society - how we do contribute, every day - they have simply looked at the economy and asked why we are a drain on it.

And that's the key "When you design a system only to catch scroungers, it is the genuine claimants that suffer for the few. When you design a system to enable genuine claimants, it's easy to see who the scroungers are" (Kaliya Franklin)

Why can't we speak with our own voice on this? I think some will be sceptical, they will say that by entering this debate, we are conceding defeat. But that's only if you see the very nature of work as a battle.

If we reclaim the work debate, don't we have a unique chance to shape it? Don't we have a way of showing all these disdainful designers of our futures why and where they have got it all so very wrong?

We can research, we can look for interesting reports from other countries, we can think about our own barriers to work and design our own solutions. Whether or not anyone ever truly develops them in the full spirit we present them, they will be there, for the record. We will have had a chance to answer all those judgemental, ignorant voices. Not spoken for, not spoken to or at.

We can tell our stories, just as we have before. We can write passionately about our own attempts to work and how the system held us back and why. We can tell twitter and Facebook.

It's a brave thing to do. We've told our stories about benefits before and it was scary. By laying ourselves bare we knew we were taking risks. Telling our work stories in this climate holds a worse fear - that any evidence we have tried to work at all will remove our security - but that in itself is exactly why we have to tell them. Just the fact that we are frightened to, says everything anyone needs to know about how punitive and degrading the current system is.

If you want to join me with this, please, use the hashtag #DisabilitysNotWorking
Post on Facebook under the title "Disability's Not working"
Or write a Disability's Not Working blog or article.

Look for papers and research - the good and the bad. The more we know the more confidently we can challenge. Share anything you find or send it around a bit on Twitter and Facebook so that we all start to become as expert in sick and disabled people working or not working as we became over the Welfare Reform Bill 2010

But the last, most vital thing is to get the message through that some people will never "work" in the sense they mean at all. They will never be "economically active" or "sustainable" or "self-sufficient" or any of the other dogmatic, de-humanising labels they invent to coat the disability stick they hit us with.

But they will almost certainly "contribute" Some will spend 90 hours a week caring for an adult or child totally reliant on them for every basic human need. Some will write great novels from their beds or paint great art using their mouths. Some will philosophise and others will make beautiful music. Some will counsel, using their experience to help others through the incredibly difficult times long term illness inevitably bring.

Any system that recognises contribution must include all contribution. Reciprocity and Responsibility work both ways, whether a "Big Society" or a "Good Society" or "One Nation" they are simply empty words unless we find a way to value the many unseen, daily contributions that keep our country rich and safe, and better.

To politicians and media and think-tanks I say : If you tell the country we contribute nothing, that we are nothing, that we're worth nothing, can you blame them for believing it? Recognising all contribution tells the public that we really are "all in it together" and might just be a first step in showing the true value of our social security system, not just it's worth.


  1. Inspired - I am both disabled and a primary carer. I am self-employed but may well see this end due to plans for Universal Credit. The blog below raises my concerns but also talks about our contribution to the economy

    I think you have hit the nail on the head.


  2. 'Arbeit macht frei' gas chambers next for those who cant work. The Tories want a return to Feudalism and the disabled stand in the way.

  3. I think this is a really positive approach. In the current system, I'm forced to focus on how disabled I am because I have to protect myself from being asked to do more than I am capable of at the cost of my health. If I was able to focus on what I could do and enabled to do that - however little - the chances are I could improve on this, small step by small step - and maybe, eventually, I could start to earn a little money. I know some people couldn't do this, but we all have a level which we could reach, though it would be short of full time working.

    Starting with voluntary work is a very good route for some and could be a positive alternative to the Work Programme - but self management of work related activity would be necessary (sorry to use this term!)

    The idea I could go from serious incapacity to full time work in one leap is ludicrous - but that's all that is on offer. If you can walk 200 metres, you can run a marathon!! We need some enlightened thinking - even the Thatcher Government had schemes to help unemployed people start their own businesses. The sterility of current thinking on Welfare is sickening. This idea is a good way to stir it up.

  4. I think we need to at least make the attempt to redefine what it means to "work". Disability hasn't prevented me from being "productive" but it does seriously inhibit the environment I can be "productive" in, the times I can be "productive" and the respect I can "earn" from that "productivity".



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  6. Mike - I think if we were able to "bank" hours over the year, then have a kind of "reckoning" at the end of the year, as someone suggested to me via email, we could devise a fair split - Responsibility and Recipocrity to "pay back" in tax. I think a proportion of that tax should go to a kind of insurance scheme open only to those with significant barriers to work through sickness and disability that is there in times of future inability to work. Crucially the fund should be controlled by the disabled person themselves either going to their employer to minimise their disruption or to subsidising income when we can't work etc.

    Ie : At the end of the year, the person has banked 500 hours at £10 an hour, they earned £5000. They should then keep £2500 of this, on top of any benefits, with half of the rest going to Gov in tax and half going into the special insurance scheme with top ups from the employer and the Gov.

    Over a certain income (I propose the minimum tax level, assuming 10k by 2015)Benefit then reduces at a fairly high marginal tax rate (as per Universal Credit) but the income up to that point is split between the sick or disabled worker, the Gov in tax, and the "future earnings" fund.

    This scheme is truly based on Reciprocity and Responsibility. The Gov supports the person with barriers to work at the marginal rates, but we pay tax, we pay our way and we get a recognition within the system that things are harder for us and always will be.

    Whilst not inititally reducing the benefit bill, it encourages people to do more, not less. the more hours you can bank, the more reward - to the person working, the country and the future for difficult times that other workers won't face.

    The benefit bill reduces, just at a different income level.
    The tax take grows, because sick and disabled people will pay a share whatever they earn.
    Any money the worker earns will create employment and go back into the economy. Crucially, the worker with significant barriers to employment becomes an utterly flexible and valuable extra resource to business.

  7. i dont know why everybody doesnt just get a citizens allowances to cover basic needs of living (payable through tax) with an additional disability premium to cover for extra needs end of story. then you can work as much or as little as you like. no one can quibble cos everybody gets the same. (although i am sure some one would try to)

  8. Someone has asked me to post the following comment via email :

    "I'm 48 years old and have had significant illness since my late 20s. Before that, I had an impairment that did not affect my "work capacity" (though discrimination meant I opted for self-employment). Chronic illness changed everything, but the problem is not within my illness but within "the system" that will not recognise and validate the contribution I can make.

    The problem for me isn’t whether or not I can work, but that I cannot work within the constraints of the existing system. This is what would work – and the only thing that would work – for me: a system that permits me to work (for money, from home) as much as I judge my variable health allows, followed by an annual financial ‘reckoning’ (similar to a tax return) that took both benefits and earnings into account in order to come up with a fair sum that I could pay back.

    ‘Permitted earnings’ doesn’t cut it and I don’t trust the DWP enough to try it. If I’m seen to work a little bit under current conditions, it will be no time at all until I’m seen to be able to work at least 16 hours per week. I love my work, but I’m not (quite) prepared to die for it.

    Also, moving on and off benefits has to become more flexible. Last time I came off for benefits for three months, it took me six months to get my benefits reinstated. By the time I stopped work, I was too ill for the amount of (unpaid) work required to get them reinstated, but ended up struggling with both exacerbated illness and desperate finances for all those months.

    When I last worked is: all the time, today, yesterday, round the clock. I think, I write, I contribute. When I last worked for money is seven years ago for that three-month episode. Had I been able to work at the level I defined as manageable health-wise, then I could have carried on earning at a very low (non-subsistence) level, but earning nonetheless.

  9. Unfortunately the economy is being deliberately reshaped to keep the maximum number of people out of paid work and ineligible for benefits, in order to increase desperate competition and drive wages down for 'mass market' jobs.

    If Labour were to come out with an unequivocal commitment to building a different kind of economy, that might help. But until that happens, now is perhaps the time for renewed focus on welfare injustices, while highlighting how impossible the current system makes it for many to work.

    Any conversation about fixing the system will only be possible when those with influence over the labour market actually want maximum employment.

  10. "No-one has ever had a sustained conversation with business about the benefits of employing people with long term conditions and disabilities, asked for their co-operation, built a coalition of companies prepared to make this a priority."
    I agree with the blog over all, but have to challenge the above quote. There are organisations working to do exactly that. I am thinking of Remploy, and also the charity I work for (Momentum Skills). We work to improve the perception of employers towards people who have sustained a brain injury to ensure both employer and empolee are aware of the others needs. We work with a bank of employers who will take a client on work placement to test out how they cope in the workplace. This can ensure they are given appropriate support to enable them to sucessfully return to work.

  11. I understand where you're coming from and would like to reiterate that for me, traditional employment does not work.

    For personal Health, Fatigue and carer duties, I can not commit to working XX hours a week/month nor can I commit to working the same XX hours between 9am & 5 am Monday to Friday.

    My last paid employment (almost 3 years ago) ended at an Employment Tribunal; as a result of management unable/unwilling to take note of my health duties. During the 30 months I worked for this Company, I never missed a deadline, nor a necessary meeting fulfilled every demand of my job role and never received anything less than glowing appraisals!

    I believe, particularly with modern Technology many jobs can be carried out primarily from home; but without a major shift in work culture this will continue to disallow disabled people to access the, albeit very slow, job market

  12. I have an auto immune condition which flares up without notice and apparently randomly. I also get very fatigued. I do not get benefits but I definitely could not work full time any more due to the fatigue and due to employers generally not liking you to take time off for hospital/medical appointments and having to take time off sick. As a result, I am self-employed and choose to work part-time so that I can work from home/bed when necessary, and take time off sick without having to ask permission. It also means I can start the working day at a time that's convenient to me (I am often no good in the mornings for example) and finish early (I can't work long days). Even if I was able to take a part-time role, most employers would want me to commit to regular hours and days and because my flare ups are so unpredictable, I just wouldn't be able to do that.
    I am extremely lucky in that I can financially afford to work part-time without too much stress. But I know that this is not the case for most people in my situation.

  13. Also awaiting Tribunal as my employers refused to make any adjustments to my working conditions when I became disabled, ignored recommendations of occupational health report and then fired me on ill health grounds when Dr's said I was too ill to work full time. Wouldn't even consider job share, despite years of unblemished work record. And Govt wants to make it more difficult to access tribunals. Companies can now fire disabled employees without fear of consequences.

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  15. Fabulous article Sue. I'm going to add the hashtag when I tweet my article that has finally made it to the Disability Rights UK blog:


    I hope this article is useful - you can see how long ago it was written, as it keeps banging on about the summer!! That was my fault - I didn't have enough spoons to finish it for when DR UK wanted it - that in itself tells the story!!

  16. I was talking today to someone from a third sector financial organisation, and told him that there was a substantial number of disabled people who are self-employed and use it as a way to manage their lives around their disabilities. He was not aware of that, and we are going to have further discussions on it. Personally I've been both self-employed and disabled since the early 90s, and am very fortunate to have a husband who earns enough to keep us when I can't earn (which these days is most of the time). I first became self-employed when I fell out with Incapacity Benefit: it was of the opinion that one day I was not employable, and the next I was and so I wasn't entitled to it. These days I'm on DLA lower rate, having run out of contributions for ESA a long time ago. However, I've had so long without DLA that it won't matter when I lose it (£20 a week barely pays for my ironing to be done). Please don't take it the wrong way - I'm exceedingly fortunate.

    Anyway Sue, what I'm trying to say is that there are many ways to work and attending a place of employment between 9 and 5 is only one of them. I just wish the Government realised that.

  17. I remember when I had a job that I really enjoyed, but was starting to struggle to get in at the same time every day and was suffering more frequent absences, I spoke to my boss one Friday and asked if I could change my working arrangements so that, as long as I worked the same hours every week, and as long as I met the specific deadlines I had to work to, could I work on an entirely flexible hours contract, coming in at the times and on days that I was able? I can promise you that the type of work I did made this completely manageable.

    The next Monday, first thing in the morning, my boss took me aside and sacked me. Before doing this he gave me a lecture telling me that I was incredibly intelligent and quick and great to work with, and could really be earning much, much more than I was, but I had to sort out my stability issues first as it was too difficult for an employer.

    This was one of the most hurtful things anyone has ever said to me. That essentially my disability was actually a character flaw that I was allowing to stand in the way of my success. I know very well how much money I could be earning if it wasn't for being disabled, but to be told that I didn't deserve to do well until my disability went away - it was unbelievable.

    After this, I was left terrified to seek any more work as I couldn't take the humiliation of being spoken to like that, or the disappointment of losing yet another job that I enjoyed. This is what the government should be targeting. Not my behaviour.

  18. I think that what Cameron really meant in his speech at the conservative party coference when talking about attitudes to disabilities was right. Yes attitudes in Britain have changed. Now instead of seeing the wheelchair, instead of seeing a disability instead of seeing a person striving to be all they can be, people now see a scrounger sponging off the state, thanks Dave for your vision of Britain, but when does were all in it together! actually start.
    Instead of putting us down, help us up, you tell us to look at what we can do, whilst removing the support we need to do those things. Isn't it really time for you as a government to practice what you preach.

  19. We in Canada are still standing with you, Sue. We haven't forgotten. I still tell whoever will listen what is happening in Britain, and I am planning to blog again soon...this post has got my mind turning...

    Hang in there...

  20. It's really bothersome how beleaguered Social Security is these days. Even more so how less and less people can avail of it. That said, there are services out there who willing to do battle, to defend this program and its obligation to the most handicapped of our brethren.