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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

What lifestyle do you think disabled people who are not working should have?

276 replies

HmmOk · 14/08/2023 20:54

Curious about what other people think. Before anyone says it, yes I am quite aware that plenty of disabled people do work and lots earn very well. However not everyone is able to do that.

I generally think disability benefits should cover a decent quality of life - should make up shortfall in rent as rents are so high, decent quality food, pay for therapies and tools that would help the person's disabilities, and pay for some fun stuff so that everyone can participate in society. People need to have a bit more money than only meets their basic needs, to be able to meet a mate for coffee or have a day out or whatnot.

Thinking about this today as not currently working due to bereavement and poor physical health and know I'm lucky to be in a loving marriage where i am supported, and for now we are ok with money. I'm hoping to find work I can do soon that won't further fuck my health.

In contrast I have a mate who is very ill with very serious life threatening conditions. She is single, abusive family of origin and she is quite vulnerable especially looking at the future. I think there should be better security for her future as the immense stress of money is not helping her health at all. Like why can't PIP be given for life to someone in that situation? It is cruel.

What do you think?

OP posts:
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5
CandyLeBonBon · 14/08/2023 21:31

HmmOk · 14/08/2023 21:19

@CandyLeBonBon yes I agree, discriminatory in all likelihood. Which should not theoretically happen but very much does.

It is the same in the workplace. In theory they are supposed to help with reasonable adjustments but I think your card is marked as soon as you mention needing anything, no matter how modest.

I think it may sometimes be different for people who are high up in their careers and well established before becoming ill or disabled. They have more bargaining chips. But not always, either.

I have several long term and significant diagnoses that affect me both physically and mentally. I have a flexible working schedule and 'reasonable adjustments' in place, legally. When the chips are down, actually none of it matters, and ultimately my health suffers.

And my company is considered 'one of the good ones'.

If I suddenly wasn't around one day, my job would be filled and the profits would keep on turning. My kids on the other hand, would lose a mother and a significant force in their lives.

I'm afraid at my age, I think those who think health conditions are 'self reported' and therefore attract financial benefits are delusional and need to give their heads a wobble!

I work, whilst experiencing significant pain on a daily basis.

I love my job. But people assuming that if you're disabled you should somehow be grateful for whatever scraps you can get, is inherently disrespectful, and one of the main reasons I work, in spite of constant 24/7 pain.

hattie43 · 14/08/2023 21:32

The disabled are exactly who we should be looking after , life has dealt them a shit hand anyway and worry about finances should not be an additional worry . I'd be a strong
advocate of no benefits to a healthy adult who chooses not to work and give that money to the disabled who need more for meds , care , mobility costs etc etc

ilovesooty · 14/08/2023 21:32

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Gratitude?

Words fail me.

Crispynoodle · 14/08/2023 21:33

Flufferblub · 14/08/2023 20:58

It is pretty crap. I was medically retired and am now unable to work. Want to get better and work, but medical professionals tend to discharge when there's nothing more they can do, and we're left to cope alone

I'm worried this is going to be me but I don't understand what it means financially to be medically retired. Can you or anyone explain it for me?

ValleyClouds · 14/08/2023 21:34

It didn’t used to be like this…it was far easier to get DLA

Which is precisely why The Tories changed it. Unemployment claims with a mental health basis were also deliberately targeted for benefit reduction.

RicherThanYews · 14/08/2023 21:34

As a disabled person, I wish there was support for people like me to access work. I am desperate to continue working but my current job is killing me and interviewers take one look and say no thanks. I have qualifications and experience but the crutches are a major barrier. I do appreciate the help from Access to Work though. I fully support a decent quality of life for fellow disabled people but I'm biased 😁

CandyLeBonBon · 14/08/2023 21:34

And maybe a smaller sense of entitlement and slightly more gratitude.

Gratitude for what, exactly?

Usernamen · 14/08/2023 21:36

The benefits should be at least equivalent to the value of the average salary in the area (NOT the national average). So that would mean whatever the net equivalent of a £40k salary is, for a disabled person living in London.

golock · 14/08/2023 21:37

My adult DS is autistic and has a 10 year award for PIP - not quite as good as his indefinite DLA award when he was a child, but the best on offer at the moment and I'm confident he'll get it renewed when the time comes (we have tons of evidence as he needs a lot of support). He also got LCWRA on a paper assessment so he gets a decent amount for UC, and no work seeking requirements. He gets enhanced rate PIP so overall it's a level of income that meets his needs (he doesn't have high expenses, and has a free travel pass so doesn't have to spend his mobility element on a car). He lives at home with us and is likely to do so for at least the next decade, maybe for life. And we support him as a family so that means he doesn't have to spend as much money on external services. We were offered social care support but they were expecting us to pay huge chunks out of his benefits for someone to take him to places like the cinema or supermarket, which frankly we can do for free.

Rachie1973 · 14/08/2023 21:37

HermioneWeasley · 14/08/2023 21:18

I think work is good for you. I’d rather see the money put into supporting employers to help
disabled people into work, and better medical/mental health care to stop people getting so ill in the first place.

for the remaining people who genuinely can’t work I’d like to see a good standard of living. But I am deeply skeptical about paying for people whose disability is entirely reliant on self report - back pain, depression etc.

Your first line is cringeworthy and reminiscent of a line once used over a gate, only they thought it would set you free.

its bloody patronising of you to assume working will somehow ‘help’ my husbands spinal osteoarthritis

we’re extremely fortunate that we don’t have to claim PIP, but people like you are why so many don’t.

Original poster
HmmOk · 14/08/2023 21:37

It is eye opening that some people presumably do think disabled people should have "gratitude".

Also curious what the gratitude is meant to be for?

Not being slung on the rubbish heap somewhere and left to die as soon as it becomes apparent we can't sustain full time employment for 40+ years, maybe?

OP posts:
GreggingIt · 14/08/2023 21:39

Many years ago I used to be an admin temp for Remploy. It’s been taken over now but great organisation from memory - anyone remember?

ValleyClouds · 14/08/2023 21:39

@Rachie1973

If you are entitled to claim PIP you absolutely should!

Bonfire23 · 14/08/2023 21:40

HermioneWeasley · 14/08/2023 21:18

I think work is good for you. I’d rather see the money put into supporting employers to help
disabled people into work, and better medical/mental health care to stop people getting so ill in the first place.

for the remaining people who genuinely can’t work I’d like to see a good standard of living. But I am deeply skeptical about paying for people whose disability is entirely reliant on self report - back pain, depression etc.

It depends what's self reporting though. My consultant says side effects of my medication are usually mild
The support group I'm in says otherwise, as does my body
But short of me videoing myself shivering and fainting at 3am post injection, they have to go off me saying what my side effects are. And there's no alternate medication so I'm stuck with the damn thing anyway

howmuchmoreofthisisthere · 14/08/2023 21:41

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Horrible attitude

LesbianNaan · 14/08/2023 21:41

HermioneWeasley · 14/08/2023 21:18

I think work is good for you. I’d rather see the money put into supporting employers to help
disabled people into work, and better medical/mental health care to stop people getting so ill in the first place.

for the remaining people who genuinely can’t work I’d like to see a good standard of living. But I am deeply skeptical about paying for people whose disability is entirely reliant on self report - back pain, depression etc.

Don’t worry, DWP are also deeply sceptical of these cases too. You need a shitload of evidence to get PIP.

NeverDropYourMooncup · 14/08/2023 21:41

SpamFrittersYouSay · 14/08/2023 21:09

Intrinsically, a disabled person would have little earning potential, compared to most able bodied people but it really depends on which industry the person is in.

Academia would be fairly well remunerated but not to big detached house standards.

However, what do you mean by disabled?

If physically challenged then the barriers are to commuting, workplace situations but, given that so many wfh then there should be no barriers.

If you're talking about MH barriers. Not sure as the variables in MH seem to change every single day .

Intrinsically, a disabled person would have little earning potential, compared to most able bodied people

Excuse me?

Did you mean to say that a disabled person is inherently going to have little worth?

FiveOClockWorld · 14/08/2023 21:42

Bonfire23 · 14/08/2023 21:40

It depends what's self reporting though. My consultant says side effects of my medication are usually mild
The support group I'm in says otherwise, as does my body
But short of me videoing myself shivering and fainting at 3am post injection, they have to go off me saying what my side effects are. And there's no alternate medication so I'm stuck with the damn thing anyway

Show quote history

I hear ya re: medication side effects. They kept telling me it can't be the meds. Contrary to what the first psychiatrist told me when prescribing them .

fullbloom87 · 14/08/2023 21:46

AnxiousFairyQueen · 14/08/2023 21:30

It seems to be virtually impossible to get PIP for autism or mental health problems. I’ve tried twice and failed and have had to move in with my mother. I won’t appeal because the initial assessment is humiliating enough. It isn’t enough to say that you’re mentally unwell….you have to pretend to live in a pigsty, have terrible personal hygiene, not be able to prepare a meal.

They send a report back saying things like “You can walk your dog”, “You didn’t go to a special school”, “You can go to a shop”, “You can communicate verbally”. Those things have nothing to do with the fact that most afternoons I can barely get out of bed. It’s a fucking joke.

It didn’t used to be like this…it was far easier to get DLA. There’s no safety net and no one seems to care. But they should because most people would be in the same predicament if they became ill.

You need backing by consultants and doctors that you have high care needs involving washing, dressing cooking etc.
if you had the backing from then then you have a right to appeal. But you need to give literally pages and pages of medical evidence with doctors all agreeing that you are physically incapable of things.
They'll never just go by diagnosis alone, always about care needs.

Crunchingleaf · 14/08/2023 21:47

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Maybe I should tell my intellectually disabled brother he needs to have more gratitude. His uncontrolled epilepsy has caused further damage to his brain. He barely has a functioning short term memory and can’t read or write. Weirdly employers aren’t queuing up to hire him.

LauderSyme · 14/08/2023 21:48

People with disabilities should have a safe and comfortable life[style] that recognises, respects and fulfils their needs.

They should live in a world which understand that money itself is far from the measure of value.

Bonfire23 · 14/08/2023 21:48

@FiveOClockWorld it was actually on here that helped me, I posted about it and someone said they would rather give birth 10,000 times than have one more injection of my drug
I screenshot it and showed my consultant!

FiveOClockWorld · 14/08/2023 21:50

Bonfire23 · 14/08/2023 21:48

@FiveOClockWorld it was actually on here that helped me, I posted about it and someone said they would rather give birth 10,000 times than have one more injection of my drug
I screenshot it and showed my consultant!

Flowers
Livelovebehappy · 14/08/2023 21:51

A lot of people with mental health issues like depression and anxiety need therapy rather than more money thrown at them.

BingoBangoFingoFango · 14/08/2023 21:52

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I’m disabled and work part time. I will say though that all the time I pushed myself to work full time I couldn’t get PIP as they used it against me (I never had the strength to appeal) but I got it the first time I applied after giving up and dropping a day at work for my well being. I know many other people this happened to as well. For me, working has incredibly negative physical affects but exceedingly good mental health benefits and I decided that trade off was worth continuing to work part time (and I tried and tried to be full time for a decade to be “normal”). But… given that a disabled person will likely have a better quality of life when not working (not everyone gets those mental health positives from their job like me or the physical issues may outweigh them for them), can you really blame them for quitting work in that scenario? PIP is a messed up system but I don’t think pitting disabled people against each other helps there. (Yes I know PIP is an in work/non means tested benefit but trust me they use working as a reason to say you can do things you can’t!)