This was my reply on another post but I wanted to share it in its own thread because I’m so shocked and saddened by the comments I see about disability and disability benefits on here. I’ve been so distressed by some of them, I ended up in tears yesterday. The way some mumsnetters talk about disabled people is not only disgusting, it’s downright dangerous and you’re allowing governments to pave the way to leave more of us dead, just like many of us died due to Tory austerity.
i know there’s a lot of older people on here who might have more conservative views and I know there’s a lot of middle class people on here who don’t know what it’s like to rely on such a pittance, and don’t spare a second to think about how little money it is- nor ask themselves why we’d choose to live on too little money, constantly with the precarity of the whims of assessors (who have targets) and governments, rather than work. I have a first class degree and plenty of relative experience to get a job. I was meant to be moving onto my PhD when I developed even more conditions.
This is a plea from the bottom of my heart and the many vulnerable people I campaign with feel unanimously the same. You’re making suffering people suffer more. Think about that.
Anyway, here’s the reply I sent, please read it and inform yourselves before commenting on fake disabled people defrauding the state, or real disabled people not bothering to work…
TBC, that group of people is so small that it’s offensive when people raise it. The UK fraud rate for disability benefits is 0.2%. It’s not worth mentioning and it muddies the water and it allows people to diagnose people as frauds by eye. Like those people who see someone stand up from their wheelchair and assume they’re a fraud because they think all wheelchair users are paralysed. Or people whose disabilities aren’t visible having to deal with friends and family saying stuff like you did x, so you must be able to do y/ you did x yesterday so you can do it today. People who make those examples against chronically ill people aren’t medically qualified and if they were, they’re not the ones who performed their medical history, examination and tests.
if it was another subject, a lot of people would be more careful about allowing sweeping statements to be made about an entire population, based on the actions of less than than half of a half of a percentage point. It’s horribly unfair and it means that disabled people like me and my disabled DC are looked at with suspicion by the general public.
i wrote something a few years back- it was published for scope and was a guest post for Mumsnet. It was called, ‘I’m tired of having to perform my disability.’ And so many people agreed with the article because they experienced the same feelings as me about being paranoid about societal judgements. So a lot of us ending up vocalising our pain when we’d otherwise be silent in it (which makes it easier to cope with) or having to transfer out of my wheelchair in a way society expects and accepts, rather than the way which is comfortable for me. It’s not fair that 0.2% of people who’ve decided to pretend our disabilities are having such an awful impact on the 99.8% who are genuine, not to mention all the genuine people who are wrongly turned down and have to appeal and put in for tribunals, and go through a hell of a lot of work to generate the necessary evidence.
if I only had one of my conditions (uncontrolled epilepsy with cluster seizures- which require emergency meds, but can also make me blind, paralysed, psychotic, incontinent, and wander off in my wheelchair), I would still need to claim disability benefits. But without my other conditions, I would seem just like anyone else between seizures, even though I have to have someone with me who’s trained to use my life saving medication at all times, it wouldn’t impact my other functions outside of the above. And when I am experiencing the above problems, my kids try to keep me inside the house (when I’m trying to run away in fear because the seizures have that impact on me afterwards) and I often just doze in bed, sometimes for a couple of days. I am often left with horrible vomiting and migraines. How would someone know what I look like when I’m very unwell when I’m either in bed or in hospital when it happens? Friends visit me in hospital, but only when I’m on the mend. They’ve seen seizures but only a couple have seen the clusters, and only one has seen my debilitating projectile vomiting condition (cvs- look it up. It goes beyond vomiting and is debilitating) because I don’t want to see people when I feel so unwell. The only reason the one friend who’s seen it has seen it is because she came to see me in hospital sans warning so I was still too ill to want visitors when she came in. So please, everyone, stop judging people as fakers and fit and we’ll because you really don’t have a clue.
i know I'm going to die young because of my health conditions (I’m 42 now and in 6 years alone I’ve been in trauma/ resus 10 times and have to be hospitalised several times a year. I lost a friend af the age of 34 to 2 of the same conditions as me, and another at 45), and I am so scared about whether my sons will be able to figure out the forms after I’m gone. Basically, I’m trying to create a guide for my eldest for how to fill in the forms for each of his brothers (he also has bipolar himself but doesn’t claim anything for it).
Can those (by no means do I only refer to the person I’m quoting but others on this thread) please actually do some research, but about fraudulence with disability benefits, but also relapsing and remitting conditions? In adding suspicions and repeating cliches which don’t apply to many, many disabilities, you’re allowing govts to effectively commit eugenics by starving us to death. Please stop, I beg you all.
As a final note: people rarely get disability benefits for low level mental illness, as otherwise claimed by the govt. My 22yo suffers from bipolar, CPTSD, and very severe social anxiety, as well as inheriting cvs, but he won’t claim, tries his hardest to get in to college for his course, and since he lost his last job for having to be taken into A&E due to throwing up blood whilst still on probation in the job, he’s worked his arse off to find other work (side note: if anyone has something in southern central Hampshire, please message. He’s training as a mechanic but he’s worked in restaurants, helped me to run my former business on the admin side, and he’s carer to 3 people, so he’s very responsible.). I have been disabled for 42 years and only gave up my business a year ago, despite having 12 conditions during the total time I ran this particular business, and other people to whom I have to be a carer- albeit through advice, admin and verbal help.
Just please stop assuming relapsing and remitting conditions are fake or not as bad as the sufferer says; stop saying mental illness can be overcome- some people can, others can’t, it’s not a personal failing; stop assuming your eyes can tell you someone’s whole health experience; and stop assuming disability benefits are too generous (actually some of the lowest in Europe vs cost of living), or that it’s easy to get disability benefits for “scroungers” because they’re hard enough for genuinely disabled people to claim.
Disabled people need the vocal public support of others right now because if they ever do manage to get the green paper through, we could lose PIP to an insufficient catalogue,, and the WCA will turn away more people like me (people with multiple complex conditions). Disabled people are in for having to survive a political storm when all we’ve done to deserve wicked treatment is being disabled. Life’s hard enough as a disabled person when society doesn’t try to tear you down and the govt isn’t trying to force you into starvation. Please be kinder.