So what on earth do people with mild disabilities do?

[Tabsicle]

This was triggered by a couple of conversations, and (I'll admit) a thread on here.

Lately it's seemed to me that as a society we've basically created a set up where if you're severely disabled there is, in theory, a safety net (I know this is being torn apart at a rate of knots) and if you're very healthy you can work, but there's a huge spectrum in the middle where people are increasingly screwed.

I was talking to a friend of mine today. She's got rheumatoid arthritis, and it hits her hands quite badly at times, but not consistently. She reckons she's fine for most of the time but, often triggered by bad weather, can have periods during which her hands just seize up and she can't do anything. She's had massive issues keeping jobs as a result because of her sickness record. She's been told she's not eligible for ESA because her condition is so variable and she's functional for the majority of the time, but the JSA people are threatening to kick her off JSA because she has had issues with attendance at a placement due to her hands, and she's probably about to receive a sanction based on the phone call she had today.

I've read similar stories here - people who are well enough that they can't claim ESA but can't hold down jobs due to significant issues with attendance. What on earth are these people meant to do? It just seems so spectacularly unfair.

That sounds awful, kali. I've heard that PIP/ESA interviews are often used as a reason to stop the other benefit, even though they shouldn't be. I assume you appealed the decision?

Lolo I just used a wheelchair as an example because I can see in that instance how it might be possible to work, obviously depending what your actual health condition/disability was. Whereas with mental health I can't imagine a scenario at all, iyswim.

Does she know that if her condition is defined as a disability under the Equality Act, 2010 that she can ask for reasonable adjustments at work and they (assuming they are reasonable) have to make them?

That might be, for example, giving her different tasks to do that she can manage when her hands are particularly bad.

She should be eligible for esa actually. If your condition has good days and bad days (which many do) then that should be taken into account and her capability to do things should be assessed using her worst days as the stick to judge.

The problem is things like pip and dla are down to human judgement at the end of the day. Used to work for the welfare rights section of a visual impairment charity. So many people got denied benefits because the assessor couldn't understand just how being severely sight impaired might make getting dressed for example.

The forms are intentionally vague as well. For example it'll say 'do you have difficulties going to the toilet'. A reasonable person might thing well I don't have an issue with incontinence and put no. Really that section should be describing all the ways going to the toilet might be difficult. Is it hard to get onto the seat unaided. Can you see where the toilet paper is. Can you see the signs for the restroom out in public. Etc etc. All the questions are that vague 'any trouble getting ready for bed' 'any trouble eating'.

I would recommend anyone wanting to fill these forms out to get a professional advocate to help who specialises in benefits. They know exactly what the assessor are looking for. And most charities will help fill them out for free.

Just as an aside I am really impressed with MN users. There have been one or two disablist comments on this thread (which I think have been made more out of ignorance than nastiness) and MN users have corrected these people.
As a woman with Asperger's I find MN the most inclusive site on the web.

"Does she know that if her condition is defined as a disability under the Equality Act, 2010 that she can ask for reasonable adjustments at work and they (assuming they are reasonable) have to make them?" that is still only a requirement in theory and in practice very few companies are on board with this idea.

I have recently started a support network for people who are VI and looking for worK, and the number of interviews and job offers which are withdrawn once it becomes apparent the person has a visual impairment is staggering. And while technically these companies are breaking the law no-one will take action against them because no-one wants to be labelled a troublemaker and put their future employment prospects at risk.

Added to that, the so-called two-ticks system which guarantees interviews to candidates with disabilities who meet the minimum requirement is not worth the paper it's written on. I know of one of the largest financial institutions in the UK, who claim that they are inclusive and wish to be known as the most inclusive of their type, who operate the two ticks scheme yet their actual application process is not accessible with a screenreader and there is no protocol to make allowances for visually impaired candidates. Thus ensuring that visually impaired candidates are excluded from the application process and therefore will not be able to demonstrate that they meet the minimum criteria....

I only ask people AFTER I have been given a job about my disability. If they ask before offering me a place that is illegal and I am not obliged to answer.

That's fine in theory, but TBH if you e.g. Use a screen reader and the interview process includes a test, then not making prospective employers aware of a disability beforehand will only put the candidate at a disadvantage because they simply wouldn't be able to complete the test.

I have invisible disabilities. In fact when I tell people about Asperger's they are normally shocked. I have spent years studying and mirroring typical body language and can just about pass as neurotypical when I put a lot of effort in.

Bookmarking

I'm now classed as disabled I have cauda equina and spinal / bladder and bowel problems all related to my CES I can't stand or sit for long periods of time so now can't work but if anyone thinks I'm a lazy Arse you are quite welcome to have a day in my shoes (just saying )

I have a (very) fluctuating illness. When I am ok, I am perfectly fine..I can do anything a 'normal' person could do. However if I do push it 'too' much I suffer for it when the next pain bout comes. I have been granted ESA after a 2 year fight which ended in a tribunal as I was told I could easily work during my pain free hours. Which to be fair is true. But factor in that I tend to be in pain on average 18-20 hours per 24..pain that is so bad it leaves me pretty much unable to move bar shifting positions on the sofa/floor to try and ease it. I get no warning, nor is there any pattern to it. I would need to find an employer who was willing to let me not only chose my own shifts, but allow me to decide at a few mins notice that I can come in, and allow me to leave as soon as the pain hits..which just is not realistic. I was even told to attend interviews and not mention my condition. What good would that do anyone...really. I was told I was 'clearly' not fit enough for JSA but not ill enough for ESA so while going through this ridiculous 'mandatory reconsideration' period they have introduced I had no income at all. Luckily, the tribunal saw sense. They didn't even need to ask me any questions, they just passed me right away as they had a mountain of my medical evidence that they had requested, and there was an actual GP on the panel rather than someone with 4 weeks 'disability training'

I dread to think the hassle I would have had if my illness was not so...physical (not sure if this is the right word) and as such there was so much evidence behind me. I really feel for people with invisible illnesses, and illnesses that vary day to day.

This is me. All you can do is struggle on, and try desperately to hold on to a job as long as you can. It's very tough at times.

once
I just used a wheelchair as an example because I can see in that instance how it might be possible to work, obviously depending what your actual health condition/disability was. Whereas with mental health I can't imagine a scenario at all, iyswim.

So you think someone with a mentally illness can't work full stop? And if they are working then it must not be 'that bad'?

For what it's worth:

Some days I'm 'fine' and do my job to my fullest.

Some days I'm struggling and work make allowances for me and I do something I can cope with for that day

Some days I can't face getting out of bed and I have to call in sick.

At the end of every day I am emotionally and mentally drained. I totally shut down. I can't cope with my children needing my attention but I do my best because I want to hear about their day and I love them and don't want them feel unloved. I cant cope with my husband wanting to have a conversation. What I really want is to crawl into bed and shut out the world.

But at least I'm working. I consider myself very fortunate to have a tolerant and inclusive employer and supportive husband.

Oh and every 5 or 6 years I have a full on breakdown and try to kill myself.

Am I ill enough for you yet??

I know lots of people in this situation and I'm there too, or at least have been until recently when I've been lucky enough to take on some online marketing work (very part time) I can do from my bed, although on worst days I can't even do that.

It really is hideous for so many now. I have a chronic degenerative lung disease and I'm on a website support group for it. One lady was on Dla and esa but at her assessments lost both - she is really very poorly and relies on her husbands money but would be utterly shafted if on her own. Another lost her Dla and was put in the wrag group and basically forced to work and her condition has worsened. I'm dreading Pip assessments as I'm sure I'll be thrown off despite not being any better.

I am lucky to be able to do this but many can't do something like online work for many reasons.

Another problem is that if you try and claim esa after being a sahm you can't get that due to NI gaps - despite home responsibilities protection

Many people fall into this gap and it's getting worse.

I don't understand why you're being so unpleasant Rinoa, I was perfectly clear in what I was asking and what I meant. I am mentally ill myself, and claiming PIP. You don;t seem to be very pleasant to a fellow sufferer.

I just don't understand how one can be disabled enough by mental illness to qualify for PIP - which sets a very high bar - whilst simultaneously able to hold down most jobs. Perhaps "ill enough" is too subjective a term; what I mean is "meeting the [very strict] criteria for PIP".

But at least I'm working.

"At least"? Is it a mark of failure not to work or something? Please don't imply that those of us who can't work are just not trying hard enough. I already feel like a worthless failure.

I'm a SAHM now because I am unemployable, I have recurring chest infections and bouts of pneumonia. Some years I never get ill like last year, but this year I'm on my third and the last was a month ago. I've just had to beg DH to pull a sickie and work from home so he can manage the kids. I just can't do it today. It worries me greatly as to how I'm going to provide for us all if Hubbie ever gets too ill to work. Ideally I need a job where I don't come into contact with other people so I can avoid catching a cold. It needs to be indoors where it's warm and dry, and no pets (allergies). I'm ill today because on Friday we took my daughter to a theme park for her birthday and it rained, my DH had a cold but it hadn't hit me properly by then, but yeah I'm done for now for another week/fortnight.

once

I mean "at least" because I'm grateful to be able to work. I know many others are not. Perhaps you didn't read the part where I said I consider myself lucky???

If I am being unpleasant it is because you seem to be continuously implying that o am somehow faking my illness to get PIP you seem to think I'm not entitled to, since you seem to believe it impossible for anyone with a mental illness can work in any way.

You do know there are many different kinds of mental illness and they effect each person differently right?

Anyway. I'm done justifying myself to you.

Also, where have I said I can hold down most jobs ?

I already said I was forced to leave my last job because I wasn't able to cope (did you miss that?).

The job I have now is not 'most jobs' bit is a very specific job. So no, I wouldn't cope in 'most jobs' (whatever that means).

Very good thread and topic for discussion.

I like the idea of assessment and working out what you can manage.

My ds has asd and would come in this middle range. His EP has just suggested he tried a reduced timetable in school. So attends FT but doesn't attend all lessons. This is because the amount of demands is too much for him and had led to an increase in anxiety which now needs treatment by Camhs.

So the same thing applies with work. It's about making it accessible in terms of what someone with a disability can so - and changing attitudes imo to what they can bring to the workplace rather than the current attitude that they are a drain on society.
My DS is a computer genius with visual special skills in top 1% of country - he would be an asset to the right employer with the right adjustments.

Captain - yep, same here. It's horrible isn't it because it's so unpredictable as well as debilitating. So an employer wouldn't want us because we would be off sick at no notice, sometimes for weeks or months at a time. My friends with this disease who are trying to work are really struggling and some have lost jobs and some worsened their condition. I was a teacher and loads of people suggest I could do supply as it will be 'easier' for me - they just don't get the relentless pain and exhaustion that comes with it - supply would kill me. I need to sleep every afternoon for one thing.

Someone upthread asked about perfect jobs for those with fluctuating conditions - for me it would be writing, I am hoping one day to start making something from my writing and am working as hard as I can towards that at the moment, the thing for me is that it's something I can do on better days and sometimes even on bad days and something I really enjoy and takes my mind off pain for a while. And it's something I'm not held to deadlines for... yet at least!