Disability has put me at the mercy of others my whole life

[Puffergalatics]

Not really an AIBU but just wanted to write this down instead of thinking about it.

I became disabled at 16, I’m now 50 and I’m taking stock of life and realised how vulnerable it’s made me.

My social life depends on people being kind and understanding of my limitations, I’ve lost best friends of 20+ years who couldn’t put up with my limitations anymore.

My work life has depended on colleagues being supportive. I had one who wasn’t at all and they made my life hell.

My financial security is at the mercy of the DWP who decide if I’m unwell enough to be given support.

Im now going through the process of ill health retirement, it’s taken 6 months so far and still no decision. The wait is killing me. My whole future rests on this decision. It’s torture.

If it fails I’ll be reliant on my DH to support me financially on top of everything else he already does for me.

Disabled people are so vulnerable and this world is brutal to us. I wouldn’t wish this on anyone.

Do you have to retire? My husband had to leave his job due to disability and he got a small settlement and now claims esa and pip. He was only ever part time so this is the same as his wages. The esa is the disabled persons version of job seekers accept he has been declared too disabled to work so doesn’t have to look for another job. Is it worth looking into this. It was about 5 years ago now but it was sorted within a few weeks

Yes, sadly I’m too ill to work anymore, ESA application is being processed, it’s peanuts though. The processes for PIP, ESA, IHR are humiliating, demoralising and intrusive. Really awful systems to access at a time when you’re already dealing with so much.

You have put the experience so well. I stay at work yet disabled because the hoop jumping for ill health retirement seems so high. I have a life limiting disease that has destroyed my body yet Im worried there will be a way to tell me I should be able to stay at work.
I adapt to people. They dont adapt to me. Despite having a head that doesnt sit straight on my spine, Ill be the one twisting and turning and I am worried as for people to stand in front of me in case they say 'what for?'
My husband like yours, supports me. I took a 50% pay cut as needed to go part time.
The DWP have been ok to me. Obvs I have to prove I am unable to live a life where I do things as they suspiciously assess me.
Im totally reliant on my GP and nurses to order and supply the drugs that keep me alive. That system itself is fragile.
Friends tell me 'you have lost your spark' Ive had to put in significant boundaries to manage friends judgements and assumptions.
Hope you get your ill health

It’s the challenge of a lifetime isn’t it. I’ve been very lucky to have a wonderful DH, I often find myself thinking about people who are disabled and living with people who aren’t as kind and loving, it makes you so vulnerable to abuse. I’d be totally lost at this stage in my life it wasn’t for DH and I’d be completely trapped with him by the system.Thankfully he’s a good one!

I agree, being disabled sucks. My life would have been a lot easier, if I was not like this, but I am. I find as I get older, my resilience is a lot less, than it was. I find that lots of people really have no idea, of what living with a disability means, and while I understand that, I just sometimes think, that if they took a moment to just think, or even observe how I have to do some things, they might understand how different my life is to theirs. I am not talking about random strangers, by the way. I am tired of having to explain myself. I hear you OP.

Yes poor you. In almost every other country in the world there'd be no benefit payments so you wouldn't have to endure the humiliation of applying for state support and could proudly depend on your family and the charity of strangers instead.

Personally I thank my lucky stars that I am disabled in a society that protects my rights and offers a pretty good financial safety net.

What an arsehole comment.

That doesn’t take away from my own experience of the benefits system, I’m allowed to feel the way I do about what I’ve lived through regardless of what it’s like in other countries. I don’t count my lucky starts for any of this.

Yep, even disabled people can be arse holes to other disabled people. Prime example of the kind of bullshit we have to put up with.

Don't be a prick. There is no reason for these processes to be as dehumanising and unfair as they are. What possible point could there be in having such thing as a society if not to provide safety and security to people with disabilities? Financial support for those who need it should be considered a basic human right, not something people with disabilities should have to perform slavish gratitude for no matter how awful the process.

They probably aren't disabled.

What an absolute wanker then although that does make more sense!

Really? A completely uncalled for nasty comment. Jumping through hoops to get benefits when you are already coping with a disability cannot be easy.
It is also untrue to say there are no benefits for the disabled In other countries. Most European countries have some support of assistance for the disabled.

You are allowed to feel shit about your situation OP. I often think it must be incredibly difficult to live in today’s world if you have a disability. I hope they agree your early retirement soon.

It is so hard OP.

I mean this in the most zoomed-out view way, but to my mind it's "nature red in tooth and claw". It's the theory of evolution in action. Disability "in the wild" as it were means a very very short life.

When evidence was found that early hominids had injuries that had healed, it was regarded as among the first signs of what we'd call civilisation, because these people had had others who would look after them, bring them food and water, defend them when they couldn't run.

Obviously we're a bit more advanced than that now, but I find it quite amazing how the principles are very similar despite all our technology.

I'm rambling a bit but that's how I've rationalised it in my head anyway - despite the general shittiness, thank god we're human and not an antelope or a lion where disability would have meant a short and brutal life.

I understand what you’re saying. We’ve made good progress but we’ve still got a long way to go.

I'm so sorry. FWIW, a lot of people are supportive of their friends, and recognise that they are in no way less, and love having them in our lives. Any sensible person should also recognise that any of us could be disabled tomorrow-which baffles me why those claiming to be anti-racist/homophobic are sometimes ableist.
My children have many friends with different disabilities, and are very happy to welcome and include them, and I'm glad to say all the class don't seem to show any ableism at parties or any other time us parents see them altogether.
In some ways, we 've made progress (look how autism/mental health was discussed last century, and no, I'm not for one minute saying everyone is better) and I hope that the next generation are very eager to make the world as accessible as possible, not trying to stop people who need wheelchairs/dogs etc going out, and being glad to pay for anything that helps people move towards equality, eg more free health care for those with disabilities (the NHS does not provide all it should, and prioritising disabled people is a step towards equality).

I agree. They’re also really inaccessible. My husband has become recently very very sick and is having to apply for PIP.

Except he’s too unwell to look at screens, he cannot write for long or read for more than 10 minutes. So I have to do it all for him. What would a single man do?? How would he have organised his medical tests and viewed his results and chased his medication?

I feel so sorry for people who don’t have support. And those who do because it isn’t enough.

That's quite mean, actually. Why are you mean to the OP? Do you think she should be grateful for living with the cards she's been dealt with without complaining? Is she not allowed to feel let down?

Of course. Because all us disabled folk think and feel alike. Excuse me for suggesting that there is an alternative narrative to a disabled life than victimhood.

Your language betrays your claim.

What is your disability?

@Puffergalatics I think there is an issue about how broad the definition of disability has become and the explosion in disability benefits awarded for such a broad range of reasons. Everyone knows someone who plays the system for less than genuine reasons.
This blurring of the boundaries has been directly detrimental to those with unquestionable and fundamentally disabling conditions such as yourself.
My take would be to congratulate you on managing to work in any capacity for all these years. You've paid your dues to the system and do not need to feel demeaned by any of the processes leading to financial support that you've earned.
I'd like to see a system where any condition that is within the control of an individual to improve would not constitute a disability. Think that would be a good start for change.

Well aren't you a treat?

I'd like to see a system where any condition that is within the control of an individual to improve would not constitute a disability. Think that would be a good start for change.

Of course you’re allowed to think whatever you like but it is healthier to focus on how fortunate you are in the world scheme of things perhaps.