Does anyone else get constantly censored when talking about their lives reality as a disabled person

Aella

This happened on reddit today. Someone made a post on casualUK, talking about how privileged we are to live in the UK. So I wrote the following reply:

Privileged to live in the UK? Try being disabled and on benefits. Even being blind, having cancer or unable to walk, or all three, people treat you like a scrounger. Even if you worked and paid taxes for decades beforehand. Getting reassessed by the DWP every year or two, even though multiple doctors have written them letters saying your condition won't improve and will actually deteriorate. Having your benefits stopped at each assessment and having to go through appeal to get them reinstated because the assessor tells blatant lies. And while you're going through appeal, having absolutely no money whatsoever. Yeah I feel so privileged to live in a country where it's considered acceptable for me to be really hungry and under constant threat of homelessness, because I committed the sin of no longer being able to work.

Not to mention all the stuff that goes along with being in poverty in a country that's falling apart at the seams. For example, someone in my position is theoretically entitled to free dental treatment. But are there any NHS dentists taking patients? No of course not. So, I need dental treatment, have no money, no free dentist will take me. Cue all kinds of dental problems and pain.

And people who don't live like this act like there's so much easily available help. "Just go to a food bank!" So... wait a week for an appointment with a GP or citizens advice to get a referral, then wait a few days for your food bank appointment, then get given three days worth of food, then starve for a week while you go through the whole process again.

Can't get a dentist?

"Just contact NHS England/Just complain to the ombudsman/your MP/just ask for an emergency appointment" Yeah tried all of those. All the NHS dentists I called charge for emergency appointments if you're not already registered with them and the people I complained to don't help.

And NHS waiting lists. I had a stroke. According to my physio, if I'd been given physiotherapy in a timely manner I might not be so disabled now. But the waiting list was long and the damage done is now severe and life changing.

This country is just like america now - all fine and dandy if you have money. Actually a wretched and thoroughly miserable place to live if you don't.

Of course, it got downvoted and then removed. It's bad enough that it's so difficult for people in circumstances like disability and/or poverty to access help, and so impossible for us to have a chance at a decent quality of life. But we are constantly shut down, censored, denied and gaslit whenever we try to talk about it. There is an absolutely disgusting culture of ignoring and downplaying the lived reality of millions of people, blaming them for circumstances beyond their control and actually being angry with them for daring to mention it. There is more anger directed towards a severely disabled person getting a pittance each month than there is towards billionaires hoarding obscene amounts of wealth and business owners committing wage theft against the lowest paid workers. What is wrong with this country, why are so many people like this? Yeah I am hangry but everything I'm saying is still true. I then tried posting it in GreenAndPleasant, a supposed socialist sub who are meant to be helpful towards the disabled. Even they removed it! Where on earth are we allowed to talk about our lives as disabled people and the effect societies policies have on us?

I tried posting it on the leftist sub too, they also immediately removed it. If even the political side that is meant to be supporting us is silencing us, where can we talk about this?

66Mustang

This is just my experience, and I am not attempting to apply a blanket statement to everyone, just sharing my experience of people I've come across … again this doesn't apply to everyone, just to make explicitly clear

But it might explain things a little bit

I have found that often people who advocate for a group they are not part of, while their intentions are certainly noble, often do not fully understand the issues we face

For example people will often get offended on our behalf and spend a huge amount of time and resources in getting people to use politically correct words when describing a group. The reality is that many people who are actually part of that group couldn't care less about political correctness and would rather people advocate for something that actually has some practical benefit

My guess is that people on the forums you suggest have a kind of idealist view that there are services for us, and they support those services, rather than supporting the individuals who use those services

An example of this is often people who have no health issues will go out of their way to praise the NHS, but those of us who have experience of using the NHS know the truth of how it's not working, yet if we try to point out that it's failing, we get shouted down

Aella

https://forum.scope.org.uk/discussion/comment/869315#Comment_869315

Yeah that happened to me on reddit too. Someone had a minor injury, went to hospital and was treated quickly, so they made a post about how awesome the NHS is. I responded with my experience of the NHS (took 3.5 years to get a cancer diagnosis, and only got it because a relative eventually paid for me to go private, and when I had a stroke I was left in the triage area all day, bleeding into my clothes with a heavy period despite repeatedly asking for a sanitary towel, then it took over a year for them to give me a physio appointment so now I'm severely disabled) and like you said I got shouted down. Nobody wants to hear it. As long as their lives are great they just don't really care.

WhatThe

Hi Aella, you have not been censored here so that answers your question.

My guess is that your reference to the US would be objected to rather than your general complaint.

I feel privileged to have been born here, to live here and to have our NHS. Welfare benefits and disability are something else and it doesn't help to lump everything together. The NHS twice saved my life as a child and my mum got her cancer diagnosis 17 days before she died but I still think we are privileged to have these resources. My dad suffered a stroke during heart surgery which went unnoticed (and untreated) but I'm still grateful he survived because of those skilled NHS surgeons.

I spent most of my adult life in severe pain because, as a woman, I was not listened to or believed. That is a cultural battle and we certainly face that on social media - angry men are everywhere! Why put yourself in the firing line when you don't need to?

We can't force people to care or try to understand what they don't understand, like living with a disability, living on benefits or being a woman. It's nobody else's fault that we become poorly or disabled or old. We're free to relocate if we don't like living here. We're free to protest without being locked up for dissent. Lastly, we're free to sound off here on Scope and learn how to manage our frustration, channel our energy wisely and campaign for change.

Aella

https://forum.scope.org.uk/discussion/comment/869733#Comment_869733

I disagree that I'm free to relocate. I always wanted to live in Sweden or Finland, but needing a lot of medical care and being unable to work at all, of course I can't go.

Cantilip

OK, I take a deep breath. No idea if this puts me in a minority in society as a whole but I think it might put me in a minority here as the forum naturally attracts people with awful problems with the DWP. I'm disabled and on benefits and I'm basically fine. Nobody treats me like a scrounger.. Nobody reassesses me monotonously often. PIP have given me 10 years. Housing Benefit did a sort of routine review spot check, but it was really nothing, just mail them a few bank statements for their records. Nobody leaves me starving. If I could wave a magic wand I'd sprinkle a bit of fairy-dust on the NHS but it's certainly not for the moment letting me down. (I say for the moment because I might in future need a joint replacement op.) I think these things do vary enormously according to which part of the country you're in.

Aella

Lucky you, I guess?

WhatThe

But you are free to relocate, as I said. You are not banned from leaving is my point as I'm sure you understood.

Whether you do or can is another point entirely! So you're getting free medical care here that you can't get abroad but that's not enough?

My mum got her cancer diagnosis 17 days before she died. No system is perfect. I am still grateful to have free medical and dental care, welfare benefits and free speech in the UK - many healthcare workers left after Brexit, not the fault of the NHS nor of non-disabled people.

Aella

Being unable to get permission to live in another country is the same as being unable to relocate. If no country will have me because I'm disabled and unable to work, then it makes no difference that the British government would allow me to leave. So I am NOT free to relocate. I cannot work and no other country is going to pay me disability benefits. And the other things you said you have, well, I have to continually fight tooth and nail to keep my benefits, go through appeals and constant reassessments, never have any security that I will get to keep them for much longer. And the NHS? The waiting lists are so long it might as well not exist. I am crippled for life because they took so long to start physiotherapy after my stroke. The physios said if it had started sooner I might have made a full recovery. It's nice that your life is all sunshine and rainbows but please don't try to enforce toxic positivity on me. I am allowed to not feel grateful that I live in a country that continually tries to impoverish me and makes me wait years on end for very necessary medical treatments.

WhatThe

Hello? You do have free choice!

I'm not in a position to relocate either but that's noone elses' fault. You can be as 'hangry' as you want but please don't pretend you are being censored in this country.

My dad's stroke also went untreated and I needed life-saving surgery as a kid because of hospital failures (and have suffered ever since!). You seem to think these things don't happen to anyone else. Most of us on this forum have struggled to keep our benefits in payment at some point and we are ALL connected by disability!

Aella

?

Being censored and being unable to leave are two different things. It's completely ridiculous to say I have a free choice in leaving this country when no other country would accept me due to my disabilities. I am not even going to argue that with you any more because you are being ridiculous. And I certainly have been censored, multiple times for speaking about this. And I also know very well i am not the only person struggling to keep my benefits or getting crappy treatment from the NHS. I thought I was responding to Cantilip who apparently has no problems whatsoever.

WhatThe

I was responding to your title question

Does anyone else get constantly censored when talking about their lives reality as a disabled person

but your beef was about the UK and whether it was a privilege to be living here. It is. No country has to accept us if we can't support ourselves now that we've left the EU… Whose fault is that?

Free speech does not mean you can say whatever you're thinking, no and you won't be censored for comments on this forum while they remain civil.

poppy123456

Working and paying your taxes for decades doesn't automatically entitle you to any benefits. For disability benefits the only ones that are automatically entitled are those that have 12 months or less left to live. For everyone else, there's no automatic entitlement.

Your benefits stopping at every review and needing to challenge the decision suggests to me that there's issues with the forms you're filling in.

It's fine to give all the information but what information are you giving? It needs to be relevant to the descriptors, giving your life story isn't needed. What about extra evidence? Is this relevant to the descriptors? Sending multiple pieces of evidence all saying the same thing isn't helpful.

The most likely reason for refusal for many people is poorly completed forms.

If you're being reviewed every year or two then why aren't you asking for a longer award? There's nothing stopping anyone asking for this and give your reasons why you think you should have a longer award. Same applies at Tribunal stage, you can ask for a longer award but you need to tell them why you think a longer award should apply.

I've never had any problems with any of the benefits I've claimed and been claiming PIP and ESA for almost 11 years.

Cantilip

Not enforcing anything on anyone, least of all 'toxic positivity'. Stated the facts of my life as you have stated the facts of yours,

Aella

https://forum.scope.org.uk/discussion/comment/879766#Comment_879766

A lot of doctors, I've found, are unhelpful when asked for a letter. Both the endocrinologist and stroke clinic said "We don't do that." The things I have so far are:

a basic letter from the ophthalmologist, confirming my vision loss and that it causes me to trip over things and bump into things.

a basic letter from the physiotherapist, saying I've been having pain and mobility issues caused by weakness in my left side, which "may" have been caused by the stroke

a letter from the mental health team confirming I am on the waiting list

a letter from a social worker, confirming the things I need daily help with and the things she helps me with

a detailed letter from my carer about the things I need help with and issues I have in daily life and accidents etc that have happened to me due to my disabilities

I'm currently waiting for my letter from the GP, an overview of all my medical issues.

I could write a personal statement?

I haven't been able to get anything else. What else would help? I could get copies of my prescriptions.

WhatThe

SCOPE, hello is my comment still stuck in the spam filter ?

Albus_Scope

Hey @WhatThe There's nothing showing in the spam filter today or yesterday I'm afraid!

WhatThe

🤔

WhatThe

Albus, my bad as they say over the pond! My comment is there 🙄