What does ‘being too ill’ look like?

Time after time I am hearing people on sickness benefits say it is okay for disabled people because they just has functional problems and we are too ill to work. But what does that actually mean?

I define work in the widest sense and as a basic, if you are able to use the internet then you are most likely to be able to work in some way. We are not talking 9 to 5 down a mine but to be able to contribute to the fabric of society.

But what does too ill mean? If you are in hospital or suffering from acute illness then I can understand you can be indeed too ill to work. But with chronic illness, to which I indeed have as well as cerebral palsy, we are talking about a level of manageability where the possibility of work is likely.

Many of the sick activists who claim they are too ill to work are appearing to actually demonstrate they can work by they own campaigning activists and I sure many of them will find jobs in user led charities as they come to terms with their own situations.

So I am left wondering what ‘too ill’ looks like and whether in reality it is about attitude rather than anything else.

If you like what I say, have a look at my website at www.simonstevens.com or follow me on twitter, @simonstevens74

10 thoughts on “What does ‘being too ill’ look like?

  1. Spoonydoc says:

    The answer is very simple. Imagine an acute illness where you are genuinely too ill to work. Then imagine that rather than get better there is no cure or treatment. You will now be that way 24/7.
    For some illnesses adjustments can be made and some degree of work can be done anyway.
    For others this will be impossible although this does not mean that life completely stops and becomes meaningless. There is more to life than making an economic contribution.


  2. I don't have to imagine it as I live in. Your attitude is what decides if you can work or not and it is insulting you feel you had a right to be paid to do nothing because you can't be bothered. While your desire for exclusion demonstrates how you feel real disabled people are better off dead with your non-disabled prejudices as you pretend to be disabled stealing our voice, money and lives!


  3. Anonymous says:

    Simon, when my seizures were very uncontrolled (several a day for 20 years, some life-threatening), I was *far* more impaired by my epilepsy than by my CP or cognitive problems. I never thought of myself as “too sick for work”, but I was certainly too sick to earn enough to live on (couldn't work enough hours), and very few employers could accommodate my needs. I'm actually one of the very lucky ones – I *did* do some paid project work when my seizures were very uncontrolled – but I know several people who have had very different experiences.

    My mother was also chronically ill (severe emphysema and arthritis, amongst other things). She couldn't walk to the front door of her house without stopping and she couldn't shower without help (eventually, she needed help to get off the toilet). She was on home oxygen; even then, her sats were usually in the high 80s or low 90s. She could get a maximum of 3 hours council support per week (program maximum – *nobody* could get more). That was supposed to cover personal care AND cleaning AND laundry AND shopping etc. She was self-employed for 15+ years before her health got too bad – but the time came when it did.

    Remember, there are many people with significant impairments who have limited or no support at home, and others who can handle part-time work or ADLs but not both. Also, “part time work” does not mean “enough work to live on” (even very modestly), especially for those of us who – because of our impairment, med side effects or both – work at a significantly slower than normative rate.


  4. Anonymous says:

    Would you prefer it if people said things like “too sick to be reliable, multiple hospitalizations in the last year” or “too sick to commit to more than 6 hours work spread over a week, and I'll have to work from home” or “too sick to manage personal care and work at the same time, when I tried working part time I didn't have the energy to shop or cook. On the waiting list for a care package” or “my last 2 employers let me go because of excessive sick leave” or “my psychiatrist has advised me not to work. I've had 6 jobs since I was diagnosed with schizophrenia; each time I had to leave within a few months because of a psychotic episode, the stress of working seems to destabilize me”. BTW, all real stories.


  5. Spoonydoc says:

    You know nothing about me.
    Your attitude is ignorant and prejudiced at best, dangerous at worse.
    As it happens I am a “real” disabled person as you would consider it. I have a progressive muscle condition comparable to muscular dystrophy. I've been using an electric wheelchair for years and have needed care from social services since my teenage years. But yes, I am also ill/sick as well.

    Being disabled never stopped me. I went to university, did a PhD and got a prestigious job. I received numerous awards and prizes, both academic and in recognition of other various achievements.
    However the illness continued to get worse. I had to cut my hours. Then I worked from home. Eventually I had to stop work.

    What do you think? That I had a personality transplant? That one year I was determined and strong and the next I suddenly wasn't? No. The only difference is that I was sicker. Sometimes you are too sick to work. This is something you are going to have to learn to accept.

    Do you know what is most ironic? I am now on benefits. But I qualify most easily through the “disability” side of things which is NOT the reason I had to give up my job.

    Give me my wheelchair, poor coordination, and all the other physical disabilities I have any day. I can work with those. But the illness? That is a different matter.

    As for your assertions that I want disabled people dead, I don't even know where to begin. You should be careful what you print.


  6. I am just fed up of being dictated to by a secret army of sick people in their desire to destroy the social model and ensure real disabled people are excluded from society because of their need for self-pity and self-loathing and cold hard cash. I say this as someone who has chronic pain and mental health issues and have the dedency not to use a sob sober to devalue the lives of other people as either having it too easy or worthless unemployable objects of pity. Good luck in your journey of pity as you are a part of the problem in excluding disabled people for medical model cash and rights. I challenge you to meet me face to face and tell me I must refuse to work because I am sick.


  7. No-one is dictating to you, Simon. And no-one is saying you shouldn't work if you can. If you can earn enough to keep yourself despite your impairments and illness, that's good. But there are many people who are disabled, sick or both,who would love to work but cannot, due to their condition, be reliable enough to earn enough to live on. These people need support, and it would be good if that support enabled them to make their own contribution, whether it be parenting their kids, looking after family members, or maybe just going online when they can and supporting others who are struggling. Just because someone is able to go online, that doesn't necessarily mean they are able to work consistently enough to satisfy an employer or earn a living in self-employment. But that doesn't mean they shouldn't have enough to live on.


  8. Spoonydoc says:

    No one should refuse or be refused work because they are sick or disabled. If you are still able to work then you definitely should. Only the disabled/sick person themselves knows what they are capable of.

    I worked for a long time while sick. I simply made adaptations (eg worked from home, got new adaptive software etc). We should strive to ensure that employers are ready to make those compromises and not overlook our potential.

    At the same time there are a minority of people for whom no compromises/adaptations will allow them to work. It took 15 years of the illness progressing, but I am now one of them. Those people need support. We should make sure that they get it.

    Those two goals are not mutually exclusive and I don't see what the issue is.


  9. Anonymous says:

    Thanks Simon, I'll be sure to remember that it's all about not having the right attitude next time I collapse in the bathroom or fall down the stairs or lose the ability to speak or have to be taken out in my wheelchair like a toddler. My transition in the space of three weeks from busy full time teacher and mother of three teenagers to someone who three years later can still barely function is clearly just down to me not thinking positively enough to pull myself together and get my arse back to work.


  10. So what you are saying if I am 'lucky' I take responsibility for my actions and anyone who proclaims themselves as a spoony is except from social responsibility as they demand the government keeps them whatever they demand without assessment and in secret as they lie about everything for cash staying ATOS murders 73 people a week. Your secret WCA report written in my name and the name of all disabled in secret by a secret army of obsessive extremist social model haters who do believe people like me are better off dead. Its a evil and immoral attack of disabled people and I am not prepared to shut up because you and your extremeist friends think you own me! That report is a act of war against real disabled people by an hidden enemy and will be treated as such as you insult my existance.


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