AIBU to think that some people with illness/disability truly cannot work at all?

I have autism and I didn’t work for several years. I am physically and mentally capable of work but no employer would have me! There’s nothing in the legislation to cover the situation where you’re capable of working but can’t because employers discriminate against you.

I wfh now (thank you Covid). But I think it’s a mistake to judge disabled people as being capable of working without considering the other side of the equation - employers are reluctant to hire us.

It worries me, I can’t work at all due to multiple conditions (ASD, ADHD, Situational mutism, EDS, PoTs, ME, endometriosis and hemiplegic migraine) I hope that whoever wins the election will understand that for some people work is impossible and we need support

I have schizophrenia and I go to work. I obviously take medication and it can be challenging for me. In the end, the love of earning my own money keeps me going. I have no physical disabilities though.

I'm unable to work, I have ME/CFS, Fibromyalgia, Arthritis, Peripheral Neuropathy, Anxiety, Depression, Autism & PTSD. I can't walk any further than 10 metres, I'm housebound, I sleep 14 hours a day, wake up around 12.00pm & then have to nap 3.00pm-5.00pm. I have brain fog, can't retain information, I can't feel my fingers, feet & legs, I have falls & then need someone to get me up.

malificent7 · Today 20:35
Yanbu.
Work is very bad for us even when we are fit and well.”

Why?

Yep. I'm one of the lucky ones. I have a good line manager and some flexibility but it's been a three year battle and an exhausting one to get adjustments and to keep them.

I still struggle to call in sick when I need to because of responsibilities in my role. I have twenty years left on mortgage, single parent, no support and I'm terrified of not being able to work. From what I know of my community, PIP is really hard to get.

It's an invisible fluctuating illness. You see me at work, you think I'm fine. You don't see me floored in bed every weekend. I have no life outside work anymore.

Yanbu.
Work is very bad for us even when we are fit and well.

This really worries me too OP. I had no idea the WCA & ESA in general is considered as too lax & open to “abuse”. I carried on in work to the detriment of my health for years until only recently & was desperate to remain in it. Apart from being able to financially survive - it was all I had left that chronic illness & disability had taken from me. I would love to be able to work now.

I think it’s easy to say oh it’s all government rhetoric when your life is dependant on external sources (ie the state) & those sources are going to be made harder to qualify for. It’s terrifying to think that when in dire need, the state is going to make it very difficult/even harder to support you.

If you OP, who works in welfare benefits yourself while also struggling with your own health & ability remain in occupation, can be saying this, then it’s no wonder swathes of the disabled community are feeling uncertain & anxious about reforms.

I (didn’t realise it at the time but) was fortunate that one of my consultants provided a very detailed functional assessment of the severity & impact of my chronic conditions. This is not always available however for every disabled individual to get. And as there is no more treatment that can help me, & no services that I can be referred on to, this one letter will become dated & understandably perhaps, no longer considered a current & therefore reflective picture of my condition in x yrs time. (Despite them saying my prognosis is poor & looks unlikely to improve significantly).

While rightly the emphasis needs to be on reliable, solid, medical proof that a person is unable to work, getting such proof is already a lottery.

I think it’s only too easy for it to get to you when your ability to survive is at the mercy of such external forces.

And if sick note culture is endemic & perpetuated by time poor GP’s - won’t moving the problem onto specialists to gate-keep & determine, create further problems? When getting to see a specialist is incredibly difficult in the first place with current waiting lists & availability of services.

Will new positions be created of DWP (or contracted out) “specialists” tasked with assessing & providing this medical proof of occupational ability (much like in PIP) for ESA?

Where nearly half of all claimants are rejected first time, & “specialists” whilst having health backgrounds are in no way specialists or have expertise in all the conditions they assess for.

With PIP at least there are tribunals, where a staggering 70% of claims initially rejected are overturned in court.
Not everyone is capable of pursuing a claim through lengthy & stressful court proceedings or are able to fight.
Is this how the most vulnerable individuals in society should be treated? To have to fight to get the DWP to overturn their initial decision of you?

I find the narrative that disabled people should work if they can - but somehow aren’t - really damaging & unhelpful.

Where is all the research to say that x % of disabled people want to & can work?
As though it is a choice to be on benefits.

If this is the case support those individuals into supportive working environments rather than punitively making it harder for the majority to receive the support they simply & desperately, I should add, need to survive.

Rant over! In solidarity though x

Of course you are right. This government talk as if all jobs are incredibly flexible, understanding, supportive etc. of course they’re not. Most jobs are dysfunctional and the complete opposite.

We are about to have a new government who as far as I can tell have their faults but are not actively evil, unlike the current lot.

Things can only get better.

*arse be through the hedge backwards

You do also realise there are different levels of disability in all of your examples?

Just because these people you worked with could work doesn't mean others with the same named condition but different needs can.

I often say I have Rheumatoid Arthritis, I don't.

I have a rare connective tissue, vascular and joint disease, that also causes urinary incontinence. FUN

When I meet you in Tescos I have Rheumatoid Arthritis as that's something you understand and also you'll say how are you?

And should my head be hanging off and by arse be through the head backwards my answer will be "I'm grand! How are you?"

I'd wager that's how it is for 99% of disabled people you know too.

Of course there are some people who cannot work because they are too ill/disabled. I don't think anyone seriously doubts that. Equally obviously, those people need to be supported by appropriate benefits.

But there are also a lot of ill or disabled people who do work and I think it is right as a general principle that those who are able to work do so, with whatever aids and adaptations or they need.

I often read here comments from people saying "I can't work because I have..." and I think of the people I have worked with who have the same condition.

Over the years I have worked with people in wheelchairs, blind people (some with dog, some without), people with autism, and people with bipolar. I had a family member with Down's syndrome who worked.
There are no doubt lots of other people I have worked with whose health conditions I have been unaware of.

I'm absolutely not suggesting that all jobs are available to people with certain conditions, but I think some ill or disabled people are written off by potential employers, or write themselves off, when they are still capable of work.

Yeah I can work and one night a week I play netball - but I have to sleep after work to be able to then play
Some nights I can exercise, some I have to go straight to bed to then be able to have the energy to shower
Plus the hospital appointments and blood tests. Mostly have phone appointments which my work accommodate thankfully but working 40hrs is becoming rough

I think something people often don't understand about chronic illness is that even if you can do something, that doing that thing might mean you then cannot do anything else that day or even week. It came up recently on a thread here from a woman who could not keep on top of the housework because of her disability, with some posters just not understanding that technically being able to do the washing up isn't enough if it means you spend the rest of the day in bed. And that this isn't a one-off while you have the flu, but a constant series of trade-offs, setbacks, boredom and frustration with no end in sight.

I wish people would listen to and believe people about their own limitations rather than viewing it through their own lens. Chronic illness and disability are NOTHING like short-term illness.

To the question as asked, undoubtedly some people have an illness or disability that prevents them working at all. This is fairly obvious, someone in a coma probably can't hold down any kind of job at all, it's not a question of willpower or "getting their shit together" - their condition means they can't work.

The real question should be, can any given individual do worthwhile/meaningful work? It needs to be assessed on a case-by-case basis. A lot of disabled people could do some kind of work, but if they are not able to do it to the standard expected of a "normal" worker, it doesn't follow that they necessarily should do it.

Equality legislation prevents discrimination against the disabled but that is looking at the problem the wrong way round. Rather than trying to "force" people into doing a job badly we should match them with work they are capable of doing well. Undoutedly and very clearly some people won't be able to do any kind of work to a standard where it's worthwhile them doing it. If they want to do something and someone is willing to pay them to do it, great, but don't try to pressure people into doing something they can't do.

I'm talking here about people who can't work rather than can't be arsed to work of course. People falsely claiming they have a disability or exaggerate it as an excuse not to work is a different and bigger issue.

I can remember several years ago, when there was another focus on 'getting everyone 'back' to work'. My son had just entered residential care, and I had to walk with him to the DWP assessment centre for a work capability test related to Universal Credit. His appointment should have taken fifteen minutes. It took nearly two hours because he could not speak, was shaking and only wanted to talk about cats (his special interest and source of comfort at the time).

The assessor was so compassionate, and told me that my son should not have been asked to attend an assessment. She added that during that week, most of her time had been taken up 'assessing' people who were so obviously not able to work.

Six years later, after three years in residential services and three in supported living, my son is engaging in voluntary work, and may soon be ready to take on some supported employment.

Vote grabbing scare tactics, sometimes supported by initiatives that target all recipients of disability/sickness related benefits may result in some people being moved from disability related benefits to employment related benefits, but they will also cause distress an unnecessary disturbance to the most vulnerable in society, and place more pressure on an already broken system of assessment.

I would also like to add that strategies used by the DWP in the assessment of disability related awards have been challenged by the EHRC. My experience (and a more recent experience involving another vulnerable relative) would suggest that individual assessors may be in a very difficult situation:
Department for Work and Pensions under investigation for treatment of disabled benefits claimants | EHRC (equalityhumanrights.com)

There are absolutely people who cannot work. The 'benefit' angle is just politics, people like to think there's large numbers of people getting huge amounts for sitting at home, and that they should be punished. That's just not true.
I will say I think there should be more support out there to help people find things that bring them joy or satisfaction. My mil is on long term sickness and she says every day is like Groundhog Day. It's really not helpful for her as she stays up all night, sleeps all day and then feels grumpy and tearful. Lots of guilt. Lots of fixating on small things. If she could be supported or to have a 1:1 to take her to do some volunteering or befriending, it would be so good for her. But there's just not the help out there. She wouldn't get anything based on a needs assessment, and might have to contribute which would make her feel guiltier about taking money out the family pot.

I’m not concerned about benefits. That’s what we pay our taxes for. I’ve never had to use them, yet but there for the grace of god (or providence, I’m an atheist 😁).

I do think flexible work would be beneficial to a lot of people who are chronically ill but sporadically feel not too bad. Personal interaction and a sense of purpose does people’s mental health no end of good.

If such flexible opportunities could be created, great. Benefits in such circumstances should not be affected. Of course, it will never happen.

Obviously YANBU - there are swathes of the population (with or without diagnosable illnesses or disabilities tbh) who are not employable in any real job. Insisting that they should do so will not make it happen.

Having said that, for people who have disabilities but really want to work, it is right that they should be facilitated to do so. I know people with very significant disabilities and health conditions who are highly skilled at what they do, and much sought after in their professions. Some of them had to fight the belief that they would not be able to live the lives that they have in fact lived.

My parent is on long term disability despite being physically able to care for the animals on their small holding. It's very, very physical work 365 days a year. Outwardly you'd think, they should be working then! In reality they're high as a kite on the cocktail of drugs they're on each and every day of their lives and are odd in their personality and communication with others because they're suffering from lack of sleep and constant pain. I'm okay with my taxes going to keep them out of the workforce. They'd be a danger to themselves, the public or the company.
Looking at them and what tasks they do every day one would say they're scamming disability.

I have an incurable cancer but when I’m on treatment I have periods of feeling quite well. I have tried to return to work twice- once to my contracted job & the 2nd time to self employed work as I thought this would be more flexible. I enjoy my job & working but with all the appointments I have, the fatigue & other side effects from treatment & the emotional toll it takes it’s very hard to continue working. Even with adjustments I have found employers don’t always get it & as I work in a client facing role I need to feel emotionally robust to support others. I am not working currently & I don’t know if ill be able to return but I agree with you OP.

I wish there were more opportunities for people who can only work limited hours. I have a friend who is VERY physically fit but has a neurological condition which means she struggles with co-ordination, is extra sensitive to noise and many other symptoms. She wants to work but after not working for over 30 years it’s hard for her to try to find the right kind of work which she would be able to manage.

The sickness benefits I may have had to rely on if I had to quit/severely reduce hours look like they're being taken away.

Are you England/UK, OP? Can any of us advise you on this? I've done a fair amount of PIP wrangling in my time.