Ok who wants to swap £2500 a month in benefits for my husbands MS and my epilepsy, narcolepsy and fibromyalgia.

[bluebirdblackbird]

Well according to a lot of people on here we are on a good thing.

the 20 seizures I have in a week, chronic pain and night terrors, losing my memory after a seizure, pissing myself, hallucinations. They are all great fun. Not to mention the amount of times I have been accused of being drunk after a seizure.

or there is my husband. Diagnosed with progressive MS. Cronic Pain, shaking, cronic pins and needles, weakness in limbs plus losing mobility. Had to give up his teaching job 4 months ago after gradually reducing hours.

Not to mention the judgement when we use a blue badge because we look ok in that moment. And apparently labour are going to find us both work. Yippee cant wait to meet the employer who is going to take us both on. I am sure pissing my chair on a reg basis won’t matter to them or the losing counciouness at least a couple of times a day.

i am just fed up of yet another they are on benefits and get money and it’s not fair stamp stamp stamp. The bastards have saved up for a holiday- it’s not fair. The bastards have a mobility car but they look fine, OMG- they have got new carpets or a new sofa.

since I am guessing they none of the moaners would actually swap places with us if they could then STFU.

oh and that pip that is easy to get- my husband gets lower rate for both and that is despite providing all the evidence and appealing so we are off to tribunal. He can’t even dress himself most days and he can’t hold a pan safely or manage his medication plus many other things. If he stays on the points he is on he will lose his pip completely under these new labour proposals.

but most people know someone who’s friends, aunts, nephews, stepdaughters, cousin twice removed who lied and got it. I was taking to a lady in a wheelchair who does not get any mobility component of pip at all.

Posting on the internet isn’t the same as a job which entails set hours and a satisfactory level of performance. Many disabled people can’t manage that. So it’s really not a fair comparison. Working from home is a possibility that government is looking into because for those with more significant disability it solves the problem of difficulties in the workplace and eliminates the need for support workers. But WFH and even hybrid working is harder to find since employers are keen for their employees to get back to the workplace. There are certainly not sufficient vacancies to cope with the numbers of disabled people currently claiming benefit.

And I notice it hasn’t come up much on this thread apart from a couple of comments, but before you can start introducing conditionality involving sanctions, and compel those with significant disability to look for work, you have to get employers on board. That’s work that still needs to be done. There are various schemes to help, which will pay for alterations or equipment, but as with everything else, funding is a problem and it takes ages to secure. I’ve know disabled people who have had to stop work because the support facilities they were offered on taking up the job never materialised.

The government is putting the cart before the horse. Where are the jobs ? Where is the abundance of WFH vacancies promised by the Tories ? Where is the campaign to advocate for disabled people in the workplace and encouragement for more employers to look to take them on ? None. Know why ? Because it’s not about supporting more disabled people into work, it’s about cutting benefit. If it wasn’t, the ground work would already have been done, and it hasn’t.

And those who were born disabled ? How do they plan for their future ill health?

Writing coherently on MN isn’t a fair comparison as to whether someone is capable of working or not. Someone could be happily tippytappying away on various threads while simultaneously shitting themselves into an adult nappy. How are you going to cope with that in the workplace ?

And yes technology is the friend of the disabled, but unfortunately the support to actually get it moving to their advantage just isn’t there. And until there’s proper effort to get employers on board and make sure support is available and funded, nothing will change. Disabled people will just get poorer as their benefits are cut.

@Rosscameasdoody sorry the thread is so long I have missed

but what’s your skin in the game? Are you disabled? Or are you not disabled but advocating for disabled people on this thread?

Those of you claiming those of us who post on MN can work - would you employ someone who is unreliable and prone to ringing in sick or who has a lot of medical appointments?

Of course it is about cutting benefits. I don't really think that there is any real pretence to the contrary. The benefits bill is too high and is completely unsustainable. Disability benefits in particular are spiralling and more and more young people are facing a lifetime on benefits. We simply can't afford as a country to go in like this. Undoubtedly we need to raise more taxes but we also need to make cuts. This inevitably involves more people coming off benefits and attempting to at least partially support themselves.

There are many on this thread that want to depict disability as something that is black and white but often there are very many people that operate in the grey. It is now normal to be managing chronic health conditions, struggling with our mental health and working way past 65. The idea that the working population battling with all these things can sustain themselves and a spiralling 'disabled' population too is just make belief.

So what can people do? Actively look for new opportunities for a starter. Your post shows that you expect someone to be employed when they could consider being self employed. They can look at alternative ways to make money and businesses and services that they can run which will provide them some of the flexibility they need. It absolutely isn't easy but the days of being able to opt out because something is hard are dwindling. Life is bloody difficult! Before posters chime in, of course this isn't possible for everyone. There are undoubtedly lots of people that are too disabled to work but there are also lots of people that could do something and currently aren't.

This thread has descended into the usual.
Disabled people not being believed as to why they are unable to to work. Being given unsolicited advice and then accused of making excuses when they say what wont work for them.

Incontinence can be more easily managed when WFH. More and more jobs are remote.

There should be more support but people can do more for themselves too. There are free courses online and videos that can help. Some people are very very passive about helping themselves.

When you’re disabled, what you can’t do is a pretty big factor. It’s also the basic premise of disability benefit. Disability Living Allowance was based on the social model of disability so concentrated on what the claimant could do if they were granted an award of benefit. Not so with PIP. It’s based on the medical model of disability. It forces the claimant to concentrate on, and explain in detail what aspect of their disability is responsible for the fact that they cannot do something, and why. And that’s for a reason. It’s much easier to deny someone benefit by disputing that they cannot do something, than to acknowledge that they may be able to actually do something with the aid of benefit granted.

So the system itself forces a negative narrative - expanding your horizons could mean you lose your PIP because there are several ways that expansion could be viewed.

Some posters are forgetting that everyone has different coping strategies and tolerances.

Just because person Y can work with Fibro doesn't mean person X is taking the piss because they can't. Person Y might have different tolerances for pain and exhaustion.

I worked when I caught Covid, didn't bother me. I felt ill, I felt ghastly ill, but I've struggled with migraines, asthma, and allergies all of my life, so I have a high tolerance for breathlessness, dizziness, and headaches. Other people were bedridden for a week. Other people literally died.

My 10-year-old niece lived with a broken elbow for 2 days. She told people she'd hurt her arm, but when asked, stated she didn't think she needed to go to hospital. I was in tears, begging anyone and everyone I knew for hard drugs when I broke my elbow because I couldn't cope with the pain.

Yes, incontinence can be much more easily managed at home, but that wasn’t my question. Not all jobs can be worked from home, so how would you manage incontinence at this level in the work place ? And where are the WFH jobs you’re talking about ? The pandemic was over a long time ago and most employers are now insisting employees to be present in the workplace or undertake hybrid working much more than they were.

The government is proposing to make changes to benefit eligibility for very significantly disabled people - those who are so affected that they are exempted from even looking for work. These people require high levels of support in daily life, and you can’t just slot them into the first job that comes along, or expect them to help themselves without support. I get that there are those who could do more to help themselves, but the group now being targeted are going to require significant support both to find work and to keep it. For most, self help is not an option, and it’s not down to being passive, it’s down to being disabled.

Op and the other pip'ers, just keep going. People like to chat nonsense to us don't they.

A circadian rhythm disorder - I sleep 6;30am to 2;30pm and no amount of trying has ever shifted this pattern for any significant time. I got 2 hours sleep a night at school and I believe the stress of having to function on that amount of sleep for so long caused other disabilities (although I can't prove they were caused by that I suspect they were). Whenever I say I have a sleep disorder and can't do 9 to 5 people respond enthusiastically about how wonderful and flexible companies these days are with flexitime but it usually turns out that means you can start at 10am at the latest. So not an option for me. And I have another 9 or 10 conditions to work around too!

Don't help who? Your argument? It's my lived experience, not an extreme response and it's exactly the situation many disabled people are in, especially if they suffer from any conditions that slow them down cognitively or if they need recovery time built in after short periods of mental exertion. Brain fog is a symptom of a great many conditions.

And what will help build skills and much needed experience? I looked into loads of other areas when I worked as a writer and took on work in a variety of different industries but I had the same problems with all of it. I earned a pittance because I could only do it slowly and it made me even more disabled having to work such long hours. I am currently working full time on my health and if I improve to the point of being able to take on work then I will. But at the moment it's just not a viable option. I spent a decade looking for something that would work and I didn't find it.

Many disabled people are also working full time. PIP is not means tested. What is your point?

Wow.

That’s really interesting, thank you for explaining. I do know people working for multinationals where the ability to work during “the daytime” of other time zones would be an advantage, but they tend to be reasonably high skilled roles, which disabilities may preclude people from getting as it’s interfered with their ability to develop skills.

I have insomnia as well as the circadian rhythm disorder and do sometimes wake up in the middle of my night, yes. Usually I get back to sleep after taking extra meds and supplements. Sometimes I don't and I go online. Occasionally I have to get up early to attend an appointment or something as some of the clinics for my conditions only run in the mornings. I will occasionally post when getting ready and then go back to sleep later in the day if I can or else I"m just tired for the rest of the day which isn't the end of the world for a day. It doesn't mean I can maintain getting up that early on a permanent basis. As I said, I have done 9 to 5 before while at school (or thereabouts) and I got 2 hours sleep a night as standard which made me dangerously ill and I believe caused other conditions/disabilities. Why do you think someone would make something like this up?

This is definitely what gets to working people. I have worked 47 years, been made redundant through no fault of my own and am now expected to survive on £92 a week. Also yes I do know loads of people who have never worked in their lives but are able to claim full benefits.

Surely you’re pretty close to retirement?

That is the amount for job seekers though. Hopefully you wont be on it for long

I'm in a very similar situation. I agree it's shit. And I have no fucking clue how people manage on benefits long term. It's been less than a month. I am behind on the rent. We have virtually no food, and the internet is about to be cut off, not to mention I am slowly losing my mind through boredom.

However, taking PIP from someone who needs it to pay for carers/equipment/therapy, etc, is not going to make my situation any better or easier.

What will help is finding a new job, which, as someone who is not disabled and who has a long work history, is going to be considerably easier for me to do than for someone who doesn't have the same experience due to illness or disability.

In fact, I start on the 2nd, assuming I end up with the job I have just accepted and not one of the two I still have to interview for.

Job seekers is far too low I totally agree. It's horrifying how little we give people to live on. But taking money from the disabled to increase funding is not the answer - austerity has done too much damage already. Many of us who are too disabled to work do not get close to minimum wage from benefits and we have all the costs of the average person plus the cost of the disability. Many of us are heavily subsidised by our families already and those that aren't are often living in the most dire poverty with no prospect of any job to ever take them out of it.

Sadly I am now 63, have bad arthritis and Colitis. The chances of me getting a job now are very slim. It's shit. My heart does go out to those who are really disabled and are struggling but as I say I also know a lot of people who lie/exaggerate to get full benefits. It's so wrong.